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The Digital Patient Care Journey: A Roadmap to Better Experiences

In today's value-based healthcare ecosystem, outcomes matter. Healthcare providers must find a way to balance delivering high-quality care while managing costs. Patients are no longer passive recipients of healthcare but active consumers with higher expectations. 

Whether it’s from increased access to information, advances in technology, or the growing emphasis on empowerment, patients are becoming more proactive about their healthcare experience. As it turns out, when organizations prioritize individualized, patient-centered care, they see positive results like improved health outcomes, lower costs, and stronger relationships between patients and clinicians.

Here, we’ll explore the advantages of tailoring the patient care journey and how to approach (and overcome) obstacles with the right digital tools, particularly for those in behavioral health and human services.

Understanding the Different Elements of the Patient Healthcare Journey

Behavioral health conditions vary greatly. Personalization allows providers to understand the unique needs and circumstances of each patient. When you tailor treatment plans to each patient’s specific needs, you can improve the effectiveness of interventions and increase the likelihood of positive outcomes. 

While it can be challenging to provide patients with such a high level of personalized care, the good news is, with the help of technology, you can deliver this type of customized care and meet patient expectations more easily.

Patient journey mapping analyzes patients' progression through the healthcare system. It does so by capturing data at various touchpoints and patient interactions. Journey mapping helps patients by addressing inefficiencies and pain points along the way to provide a more seamless and positive patient experience.

On the other hand, personalized care planning focuses on creating customized care plans for each patient. Care planning considers a patient's medical history, preferences, and goals to optimize treatment approaches, improve outcomes, and boost patient satisfaction. 

By combining these concepts, you can create a more holistic approach to healthcare. This integration allows providers to chart a smooth course through programming or recovery that takes into consideration the patient’s needs, goals, and perspectives while empowering patients through shared decision-making. 

Benefits of Patient Care Journeys

The patient care journey shifts health care from reactive to proactive, allowing healthcare service providers to predict service gaps and establish preventative routines that promote better health outcomes . 

Positive patient experiences are more likely to result in patient retention and potentially lead to future referrals. According to the Beryl Institute , more than half of patients are likely to share a positive experience while roughly the same amount will tell others about a negative experience they’ve had with a health provider or team. Moreover, if a patient has a negative experience, more than 25% will not return to follow up with that care provider, and about 21% may seek out a different doctor or medical facility.

Personalized patient care journeys are exceedingly important in behavioral health. However, they tend to be underused. One study found that less than half of respondents used personalized care planning and shared decision-making even though both types of collaborative care were effective in decreasing depression and anxiety symptoms, improving medication adherence, and reducing healthcare costs. This represents an opportunity for behavioral health to adopt collaborative models to which patient care journeys could contribute. 

Other benefits for providers and patients include:

  • Access to care : Patients log in and view their digital care plan from any device 24/7 as long as they have an internet or data connection.
  • Resources : Educational resources help patients learn about their condition, relapse prevention strategies, and treatment options. These resources help patients engage with peers or take interactive videos, quizzes, or assessments.
  • Data insights : Digital care plans help healthcare providers make data-driven decisions and optimize care delivery by tracking patient progress and providing real-time data about patient engagement (PE) .
  • Communication : Using digital care plans, patients, caregivers, and healthcare providers can communicate securely, resulting in a more integrated and collaborative care system.
  • Collaboration : Creating a care plan that considers the patient's goals can foster trust and boost patient retention and engagement.

Overcoming Barriers Through Technology

Patient care journey: employee using a computer

There are logistic and technological barriers to implementing patient engagement programs that include personalized care journeys. For one, some healthcare organizations face challenges in identifying all touchpoints in the patient journey. 

Overcoming resistance to change and a lack of technological resources when implementing patient care journeys is another challenge. Furthermore, creating an individual care plan manually is time-consuming.

Fortunately, by partnering with a vendor offering advanced digital solutions, such as a comprehensive electronic health record (EHR) and mobile-friendly patient engagement solutions, you can speed up adoption and improve patient outcomes. 

Once implemented, digital care plans can revolutionize how you deliver personalized care and engage with your patients. Automation simplifies planning and improves resource allocation while giving you full control of scheduling interactive content delivery at any cadence. 

Providing the right resources at the right time can improve a patient’s adherence to treatment plans, boost engagement between appointments even after programming ends, and meet expectations for a highly personalized patient experience.

The CaredFor App: Enhancing Patient Care With Care Journeys

The CaredFor app is a cutting-edge patient engagement platform designed to help healthcare providers deliver personalized and automated patient care experiences. 

With its unique Care Journeys feature , the app enables providers to create configurable, step-by-step experiences for individuals or groups of patients. These targeted experiences include a wide range of activities, such as journaling, reading articles, completing surveys, and accessing educational resources.

Care Journeys provide healthcare professionals with a powerful tool for synchronizing patient journey mapping and personalized care planning. With Care Journeys, providers can visualize the patient's entire care journey, identify opportunities for custom interventions, and create tailored care plans that address each patient's needs and preferences.

The CaredFor app offers numerous features, including the following: 

  • Personalized Care Plans : Tailored and interactive care plans personalized to each individual's needs and preferences
  • Care Management : Assistance with scheduling appointments and access to healthcare providers when needed
  • Family Engagement : Tools to keep family members informed and involved in the care process
  • Communication : Secure messaging and video conferencing capabilities for communication between patients and healthcare providers
  • Education and Resources : Access to educational materials and resources to help patients and their families better understand their condition and treatment options 
  • Appointment Reminders : Automated reminders for patients when they have an upcoming appointment to reduce no-shows
  • Health Analytics : Data analysis and reporting tools to track patient progress and help healthcare providers make informed decisions
  • Support Groups : Access to online support groups and resources for patients, their families, and alumni

Consider Patient Care Journeys as Part of a Larger Engagement Strategy 

Patient care journey: entrepreneur having a video call using a laptop

Today's patients expect more from their healthcare experience. They’re no longer passive care recipients; they’re active stakeholders in their health journey. As such, they demand a personalized, value-based approach to care that engages them at every stage of the patient journey, from pre-visit through follow-up care.

ContinuumCloud’s CaredFor app features Care Journeys, a tool for healthcare providers to create personalized and customizable experiences for individuals or groups. The app includes various activities like journaling, reading articles, and completing surveys to keep patients and alumni motivated.

To expand the continuum of care beyond traditional appointments, providers can easily build Care Journeys that focus on specific conditions, themes, or scenarios aligned with treatment goals. 

Thanks to the CaredFor app, providers can create a broad PE strategy with opportunities for ongoing engagement beyond the initial encounter through regular follow-ups, reminders, and health promotion campaigns to foster long-term relationships and promote patient well-being.

Connect with us today to learn more about meeting patient expectations and implementing Care Journeys as part of a larger patient engagement strategy.

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  • Published: 04 December 2019

“Patient Journeys”: improving care by patient involvement

  • Matt Bolz-Johnson 1 ,
  • Jelena Meek 2 &
  • Nicoline Hoogerbrugge 2  

European Journal of Human Genetics volume  28 ,  pages 141–143 ( 2020 ) Cite this article

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“I will not be ashamed to say ‘ I don’t know’ , nor will I fail to call in my colleagues…”. For centuries this quotation from the Hippocratic oath, has been taken by medical doctors. But what if there are no other healthcare professionals to call in, and the person with the most experience of the disease is sitting right in front of you: ‘ your patient ’.

This scenario is uncomfortably common for patients living with a rare disease when seeking out health care. They are fraught by many hurdles along their health care pathway. From diagnosis to treatment and follow-up, their healthcare pathway is defined by a fog of uncertainties, lack of effective treatments and a multitude of dead-ends. This is the prevailing situation for many because for rare diseases expertise is limited and knowledge is scarce. Currently different initiatives to involve patients in developing clinical guidelines have been taken [ 1 ], however there is no common method that successfully integrates their experience and needs of living with a rare disease into development of healthcare services.

Even though listening to the expertise of a single patient is valuable and important, this will not resolve the uncertainties most rare disease patients are currently facing. To improve care for rare diseases we must draw on all the available knowledge, both from professional experts and patients, in order to improve care for every single patient in the world.

Patient experience and satisfaction have been demonstrated to be the single most important aspect in assessing the quality of healthcare [ 2 ], and has even been shown to be a predictor of survival rates [ 3 ]. Studies have evidenced that patient involvement in the design, evaluation and designation of healthcare services, improves the relevance and quality of the services, as well as improves their ability to meet patient needs [ 4 , 5 , 6 ]. Essentially, to be able to involve patients, the hurdles in communication and initial preconceptions between medical doctors and their patients need to be resolved [ 7 ].

To tackle the current hurdles in complex or rare diseases, European Reference Networks (ERN) have been implemented since March 2017. The goal of these networks is to connect experts across Europe, harnessing their collective experience and expertise, facilitating the knowledge to travel instead of the patient. ERN GENTURIS is the Network leading on genetic tumour risk syndromes (genturis), which are inherited disorders which strongly predispose to the development of tumours [ 8 ]. They share similar challenges: delay in diagnosis, lack of cancer prevention for patients and healthy relatives, and therapeutic. To overcome the hurdles every patient faces, ERN GENTURIS ( www.genturis.eu ) has developed an innovative visual approach for patient input into the Network, to share their expertise and experience: “Patient Journeys” (Fig.  1 ).

figure 1

Example of a Patient Journey: PTEN Hamartoma Tumour Syndrome (also called Cowden Syndrome), including legend page ( www.genturis.eu )

The “Patient Journey” seeks to identify the needs that are common for all ‘ genturis syndromes ’, and those that are specific to individual syndromes. To achieve this, patient representatives completed a mapping exercise of the needs of each rare inherited syndrome they represent, across the different stages of the Patient Journey. The “Patient Journey” connects professional expert guidelines—with foreseen medical interventions, screening, treatment—with patient needs –both medical and psychological. Each “Patient Journey” is divided in several stages that are considered inherent to the specific disease. Each stage in the journey is referenced under three levels: clinical presentation, challenges and needs identified by patients, and their goal to improve care. The final Patient Journey is reviewed by both patients and professional experts. By visualizing this in a comprehensive manner, patients and their caregivers are able to discuss the individual needs of the patient, while keeping in mind the expertise of both professional and patient leads. Together they seek to achieve the same goal: improving care for every patient with a genetic tumour risk syndrome.

The Patient Journeys encourage experts to look into national guidelines. In addition, they identify a great need for evidence-based European guidelines, facilitating equal care to all rare patients. ERN GENTURIS has already developed Patient Journeys for the following rare diseases ( www.genturis.eu ):

PTEN hamartoma tumour syndrome (PHTS) (Fig.  1 )

Hereditary breast and ovarian cancer (HBOC)

Lynch syndrome

Neurofibromatosis Type 1

Neurofibromatosis Type 2

Schwannomatosis

A “Patient Journey” is a personal testimony that reflects the needs of patients in two key reference documents—an accessible visual overview, supported by a detailed information matrix. The journey shows in a comprehensive way the goals that are recognized by both patients and clinical experts. Therefore, it can be used by both these parties to explain the clinical pathway: professional experts can explain to newly identified patients how the clinical pathway generally looks like, whereas their patients can identify their specific needs within these pathways. Moreover, the Patient Journeys could serve as a guide for patients who may want to write, in collaboration with local clinicians, diaries of their journeys. Subsequently, these clinical diaries can be discussed with the clinician and patient representatives. Professionals coming across medical obstacles during the patient journey can contact professional experts in the ERN GENTURIS, while patients can contact the expert patient representatives from this ERN ( www.genturis.eu ). Finally, the “Patient Journeys” will be valuable in sharing knowledge with the clinical community as a whole.

Our aim is that medical doctors confronted with rare diseases, by using Patient Journeys, can also rely on the knowledge of the much broader community of expert professionals and expert patients.

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Acknowledgements

This work is generated within the European Reference Network on Genetic Tumour Risk Syndromes – FPA No. 739547. The authors thank all ERN GENTURIS Members and patient representatives for their work on the Patient Journeys (see www.genturis.eu ).

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Matt Bolz-Johnson

Human Genetics, Radboud University Medical Center, Nijmegen, The Netherlands

Jelena Meek & Nicoline Hoogerbrugge

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Correspondence to Nicoline Hoogerbrugge .

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Bolz-Johnson, M., Meek, J. & Hoogerbrugge, N. “Patient Journeys”: improving care by patient involvement. Eur J Hum Genet 28 , 141–143 (2020). https://doi.org/10.1038/s41431-019-0555-6

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Received : 07 August 2019

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Accepted : 01 November 2019

Published : 04 December 2019

Issue Date : February 2020

DOI : https://doi.org/10.1038/s41431-019-0555-6

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Patient journey mapping: what it is, its benefits, and how to do it

We've all been patients at some point, but our journeys were not the same. Patient journey mapping holds the key to unraveling this mystery, providing a strategic lens into the diverse pathways individuals tread throughout their healthcare experiences.

In this article, we'll explore the pivotal role of patient journey mapping in the healthcare industry, uncovering its profound benefits for both providers and patients. From amplifying patient satisfaction to streamlining operational processes, the impact is transformative.

But how does one embark on this journey of understanding and improvement? We'll guide you through the essential steps and considerations, offering insights into the art of crafting a meaningful healthcare patient journey map.

Join us as we peel back the layers of patient experience journey mapping. This powerful tool not only illuminates the complexities of healthcare but also empowers providers to reshape and enhance the patient experience.

  • 1.1 Difference from other customer journeys
  • 2 Patient journey mapping benefits
  • 3 Patient journey stages
  • 4.1 Clinical journey maps
  • 4.2 Service delivery maps
  • 4.3 Digital journey maps
  • 4.4 Chronic disease management maps
  • 4.5 Emergency care journey maps
  • 4.6 Pediatric patient journey maps
  • 4.7 Palliative care maps
  • 5 How to do patient journey mapping?
  • 6.1 Patient-centered care
  • 6.2 Streamlined access to care
  • 6.3 Effective communication
  • 6.4 Education and empowerment
  • 6.5 Care coordination
  • 6.6 Technology integration
  • 6.7 Feedback and continuous improvement
  • 6.8 Cultural competency
  • 6.9 Emotional support
  • 6.10 Efficient billing and financial assistance
  • 7 Templates
  • 8 Wrapping up 

What is a patient journey?

patient journey

A patient journey is the entire process a person goes through when seeking and receiving a healthcare service. It covers everything from first noticing symptoms or realizing the need for care and medical attention to finally resolving the health issue. The journey involves patient interactions with healthcare professionals, diagnostic procedures, treatment activities, and follow-up care.

Mapping and understanding the patient journey can help boost the quality of hospital care and improve patient satisfaction. By pinpointing challenges, patient communication gaps, and areas for enhancement, care providers can refine their services to better cater to patients' needs. It also contributes to promoting patient-centered care, shifting the focus beyond just treating diseases to considering the overall well-being and experience of the patient.

Difference from other customer journeys

While the concept of patient journey mapping is similar to customer journey mapping , there are unique aspects specific to the healthcare domain. This is how a patient journey differs from any other customer journey:

  • Emotional intensity. Health-related experiences often involve heightened emotions, including fear, anxiety, uncertainty, a sense of losing control, and a dependence on others. The emotional aspect is more pronounced in patient journeys compared to customer journeys in most industries.
  • Complexity and uncertainty. Healthcare journeys often involve multiple stakeholders, various diagnostic and treatment options, and inherent uncertainties. Navigating these complexities requires a different approach compared to more straightforward consumer experiences. Comparing buying eyeglasses online and visiting a doctor — both are experiences, but how different they are!
  • Regulatory and ethical considerations. Healthcare is heavily regulated, and ethical considerations play a significant role there. Patient journeys must align with regulatory standards and ethical principles that other industries don’t have.

critical clinical decision points

  • Clinical decision points. Patient journeys involve critical clinical decision points, such as diagnosis and treatment choices. These decisions not only impact the patient's health but also influence the overall trajectory of the journey.
  • Care continuum. Patient journeys often extend beyond a single episode of care. They may involve long-term management, follow-up appointments, and ongoing support, creating a continuous care continuum.
  • Interdisciplinary collaboration. Healthcare is often delivered by a team of professionals from different disciplines. The patient journey may involve collaboration among physicians, nurses, specialists, and other healthcare providers.

Patient journey mapping benefits

Patient journey mapping benefits

Mapping a patient journey offers a range of benefits that contribute to improving the overall quality of healthcare delivery. Here are some key advantages:

  • Visualization of the entire patient journey helps healthcare providers identify critical patient journey touchpoints that impact patient satisfaction and experience and require immediate attention. By paying more attention to these touchpoints, you ensure a more positive overall journey.
  • Gaps in care and challenges are highlighted among healthcare professionals. Addressing these issues ensures a more seamless and collaborative approach to patient care.
  • Pain points and barriers become evident, enabling healthcare providers to proactively address issues that may hinder effective care delivery.
  • Understanding individual patient journeys allows for more personalized ongoing care plans. Tailoring interventions to specific needs and preferences improves patient engagement and outcomes.
  • By mapping a patient journey, you can identify resource-intensive stages and areas where efficiency can be improved, enabling a healthcare organization to allocate resources more effectively.
  • It's a great way to identify opportunities for smoother transitions between different stages of care, ensuring continuity and preventing gaps in treatment.
  • It becomes clear where patient involvement in the decision-making process can contribute to their healthcare journey.

Example: Tom, recovering from surgery, feels more empowered as his healthcare team provides clear post-operative care instructions, making him an active participant in his recovery.

In summary, patient journey mapping provides a comprehensive framework for healthcare improvement, addressing specific challenges at each stage and leading to tangible enhancements in patient experience, communication, and overall care delivery.

Patient journey stages

Patient journey stages

Patient journeys can differ, and if we take a broad perspective, some key stages would include:

Awareness 

This stage involves the patient recognizing symptoms and becoming aware of a potential health issue.

  • Key considerations: Pay attention to how patients identify and interpret their symptoms, as well as the information sources they consult.

Example: John notices persistent joint pain and, through online research, suspects it might be arthritis. His journey begins with a heightened awareness of his symptoms.

Seeking information

Patients actively look for information to understand their symptoms, potential causes, and the importance of consulting a healthcare professional.

  • Key considerations: Review the information sources patients use and how well they understand the need for professional medical advice.
  • Example: Emily researches her persistent cough online, learning about various respiratory conditions and recognizing the importance of seeing a doctor for an accurate diagnosis.

First contact

This marks the initial interaction with the healthcare system, typically through scheduling an appointment with a primary care physician.

  • Key considerations: Assess the ease of access to healthcare services and the patient's initial experience with medical professionals.
  • Example: Alex schedules an appointment with his family doctor to discuss recent changes in his vision, initiating his journey within the healthcare system.

Diagnostic process

Patients undergo diagnostic tests to identify the root cause of their symptoms.

  • Key considerations: Examine the efficiency of the diagnostic process and the clarity of communication about the tests.
  • Example: Maria undergoes blood tests and imaging to determine the cause of her abdominal pain, marking the diagnostic phase of her journey.

Treatment planning

Patients receive a diagnosis, and healthcare providers collaborate on creating a personalized treatment plan.

  • Key considerations: Evaluate how well the diagnosis is communicated and involve patients in treatment decisions.
  • Example: Emily receives a diagnosis of rheumatoid arthritis. Her healthcare team takes the time to explain the condition, discusses various treatment options, and actively involves her in deciding on a comprehensive plan that combines medication, physical therapy, and lifestyle adjustments.

Treatment and clinical care service

Patients initiate the recommended treatment plan, experiencing the day-to-day challenges and improvements associated with their patient journey in a hospital.

  • Key considerations: Monitor treatment adherence, side effects, and the patient's overall experience during this active phase.
  • Example: Sarah starts chemotherapy for her cancer, navigating the treatment process with the support of her healthcare team.

Psychological support

Patients deal with the emotional toll of managing a health condition, including anxiety, frustration, or isolation.

  • Key considerations: Acknowledge and address the emotional aspects of the journey, providing resources for mental health support.
  • Example: James copes with the emotional challenges of managing chronic pain, seeking counseling to navigate the psychological impact.

Regular checkups

Patients undergo routine checkups to monitor their health status and adjust treatment plans as needed.

  • Key considerations: Ensure consistent communication and scheduling of regular checkups to track progress and address any emerging issues.
  • Example: Sarah, diagnosed with hypertension, attends regular checkups where the healthcare team monitors blood pressure, discusses lifestyle adjustments, and ensures medication efficacy. The routine checkups create a proactive approach to managing her condition.

Patients provide feedback on their experiences, allowing healthcare providers to refine and tailor their care.

  • Key considerations: Establish mechanisms for patients to share feedback easily and transparently, encouraging an open dialogue.
  • Example: John shares his experiences with a new treatment plan, providing feedback on its effectiveness, side effects, and overall impact on his daily life. This feedback loop allows the healthcare team to make timely adjustments and improve the patient's journey.

The stages may vary based on diverse scenarios and individual health circumstances. For instance, when a patient undergoes surgery or faces an acute medical event, the trajectory of their journey can diverge significantly from a more routine healthcare experience. 

Factors such as the need for emergency care, hospitalization, and specialized interventions can introduce unique stages and considerations. Additionally, variations may arise due to the specific nature of medical conditions, treatments, and the individual preferences and needs of patients. 

Recognizing this variability is crucial for comprehensive journey mapping, allowing for a more nuanced understanding of the patient experience across different healthcare contexts.

Types of healthcare journey maps

Types of healthcare journey maps

Healthcare journey maps can take various forms depending on their focus, purpose, and the specific aspects of the patient experience they aim to understand. 

Here are a few types of healthcare journey maps:

Clinical journey maps

Focus: Emphasize the clinical aspects of a patient's experience, including diagnosis, treatment, and recovery.

Purpose: Help healthcare providers understand the medical processes and interventions involved in the patient's journey.

Example: A clinical journey map for a cancer patient would detail the steps from initial symptoms to diagnosis, treatment modalities, and post-treatment care.

Service delivery maps

Focus: Highlight the various touchpoints and services a patient encounters throughout their healthcare journey. Then, detail the back and front processes your team does or has to do during each stage. 

Purpose: Enable healthcare organizations to assess the efficiency and effectiveness of service delivery.

Example: Mapping the service delivery for a patient undergoing surgery, including preoperative consultations, surgical procedures, and post-operative care.

Digital journey maps

Focus: Examine the patient's interaction with digital tools and technologies, such as online portals, mobile apps, and telehealth platforms.

Purpose: Help improve the digital aspects of patient engagement and communication.

Example: Mapping the patient's journey when using a telehealth platform for virtual consultations, prescription refills, and accessing medical records.

Digital journey maps

Chronic disease management maps

Focus: Explore the long-term journey of patients managing chronic conditions.

Purpose: Aid in understanding the challenges and opportunities for supporting patients in their ongoing self-management.

Example: A journey map for a diabetes patient would encompass regular monitoring, medication management, lifestyle adjustments, and periodic checkups.

Emergency care journey maps

Focus: Examine the patient’s experience during emergencies, from the onset of symptoms to emergency room admission and follow-up care.

Purpose: Help optimize response times, communication, and the overall emergency care process.

Example: Mapping the journey of a patient experiencing chest pain, from the initial call to emergency services to the triage process and subsequent cardiac care.

Pediatric patient journey maps

Focus: Tailored specifically for the unique needs and considerations of pediatric patients and their families.

Purpose: Address the emotional and practical aspects of pediatric healthcare experiences.

Example: Such a map is good for a child undergoing surgery to consider the role of parents, age-appropriate communication, and post-operative care.

Palliative care maps

Focus: Center on the patient's journey when facing serious illness, with a focus on providing comfort and support.

Purpose: Enhance the quality of life for patients and their families during end-of-life care.

Example: This kind of journey map suits a patient receiving palliative care when considering symptom management, emotional support, and coordination of services.

The mentioned types of maps cover different patient scenarios and clinical cases. There can also be "AS-IS" and "TO-BE" maps, reflecting the current state of the journey and the desired one, respectively.

All these types of healthcare journey maps offer a nuanced understanding of the diverse aspects of patient experiences, allowing healthcare providers and organizations to tailor their services to meet the unique needs of different patient populations.

How to do patient journey mapping?

How to do patient journey mapping?

Mapping a patient's journey is a thorough process that needs careful planning, teamwork, and analysis. Here's a guide on how to do it:

  • Define the objectives

Clearly articulate the goals of the patient journey mapping exercise. Determine what aspects of the patient experience you want to understand and improve. All involved parties should be aware of these goals and agree with them.

  • Assemble a cross-functional team

Form a team that includes representatives from various departments, including healthcare providers, administrative staff, patient advocates, and anyone involved in the patient experience.

  • Do research

Conduct thorough research to gather quantitative and qualitative data related to the patient experience. This may involve analyzing patient records, studying existing feedback, diving into analytics and market research, and reviewing relevant literature on best practices in healthcare.

  • Select a patient segment

Identify a specific patient segment or persona to focus on. This could be based on demographics, health conditions, or specific healthcare services. 

Tip: You can leverage your segments or patient personas to craft an empathy map , which is particularly valuable in healthcare.

  • Conduct stakeholder interviews

Interview stakeholders, including healthcare professionals and administrative staff. Gather insights into their perspectives on the patient journey, pain points, and opportunities for improvement.

  • Define the stages

Outline the patient journey by mapping out each stage and interaction with the healthcare system. This can include pre-visit, during a visit, and post-visit experiences.

Tip: To speed up the process, run a journey mapping workshop with your team. It will help with the next step, too. 

  • Create the patient journey map

Develop a visual representation of the patient journey. This can be a timeline or infographic that illustrates each stage, touchpoint, and the emotional experience of the patient.

  • Identify pain points and opportunities

Analyze the collected data to pinpoint pain points, areas of friction, and opportunities for improvement. Consider emotional, logistical, and clinical aspects of the patient experience.

Identify pain points and opportunities

  • Review and validate

Consider collaborative journey mapping . Share the draft patient journey map with stakeholders, including frontline staff and patients, to validate its accuracy. Incorporate feedback to ensure a comprehensive and realistic representation.

  • Develop actionable plans

Generate specific, actionable plans based on the identified pain points and opportunities. Each initiative should be feasible, considering resources and organizational constraints.

  • Prioritize and implement changes

Prioritize the recommendations based on impact and feasibility. Begin implementing changes that address the identified issues, whether they involve process improvements, staff training, or technology enhancements.

  • Monitor and iterate

Continuously monitor the impact of implemented changes. Gather feedback from both staff and patients to understand the effectiveness of the improvements. Iterate on the patient journey map and make recommendations as needed.

  • Measure your success 

You can also establish KPIs to measure the success of any improvements made based on the patient journey mapping insights. These could include patient satisfaction scores, reduced wait times, or improved communication metrics.

  •  Document insights (optional)

And keep a record of the lessons learned during the patient journey mapping process. This documentation can inform future initiatives and contribute to ongoing efforts to enhance the patient experience.

  • Promote a culture of continuous improvement

Foster a culture within the organization that values continuous improvement in patient care. Encourage ongoing feedback and regularly revisit your journey map to ensure its relevance over time.

By following these steps, healthcare organizations can gain valuable insights into the patient experience, leading to targeted improvements that enhance healthcare quality and patient satisfaction.

How to improve the patient journey?

How to improve the patient journey?

Striving for a seamless patient journey involves enhancing the overall experience that individuals have when seeking and receiving healthcare services. Here are some strategies to consider:

Patient-centered care

  • Prioritize patient needs and preferences.
  • Emphasize education and empower patients to actively participate in their healthcare journey.
  • Foster open communication and active listening.

Streamlined access to care

  • Reduce wait times for appointments and procedures.
  • Implement online scheduling and appointment reminders.
  • Provide options for virtual consultations when appropriate.

Effective communication

  • Ensure clear and understandable communication with patients.
  • Provide information about treatment plans, medications, and follow-up care.
  • Confirm that patients are well-informed about the potential risks and benefits of treatment options.

Education and empowerment

  • Offer educational resources to help patients understand their conditions and treatment options.
  • Encourage patients to actively participate in their health management.
  • Provide tools for self-monitoring and self-management when possible.

Care coordination

  • Improve collaboration and communication among healthcare providers to strengthen care coordination, ensuring a more cohesive and seamless experience for patients throughout their healthcare journey.
  • Define and implement standardized protocols for communication and handovers between care teams, reducing the risk of errors and ensuring continuity of care.
  • Implement remote monitoring technologies to track patients' health remotely, enabling timely interventions and reducing the need for frequent in-person visits.

Technology integration

  • Adopt electronic health records (EHRs) for efficient information sharing.
  • Use telemedicine to enhance accessibility and convenience.
  • Implement mobile health apps for appointment reminders, medication management, and health tracking.

Feedback and continuous improvement

  • Conduct regular surveys to gather specific insights into patient satisfaction, allowing for a more nuanced understanding of their experiences.
  • Establish easily accessible channels for patients to provide real-time feedback, ensuring that their voices are heard promptly.
  • Respond promptly to patient feedback, address concerns, and communicate any changes or resolutions, fostering a sense of responsiveness and accountability.

Cultural competency

  • Train healthcare staff to be culturally competent and sensitive to diverse patient needs.
  • Promote diversity in healthcare staff to reflect the communities served, fostering a more inclusive and culturally sensitive environment.
  • Recognize and celebrate cultural awareness events within the healthcare setting, fostering an inclusive atmosphere that appreciates the richness of diverse traditions.

Emotional support

  • Address the emotional and psychological aspects of healthcare.
  • Provide resources for mental health and emotional well-being.
  • Consider support groups or counseling services.

Efficient billing and financial assistance

  • Simplify billing processes and provide clear information about costs.
  • Offer financial assistance programs for patients in need.
  • Communicate transparently about insurance coverage and out-of-pocket expenses.

Staff training:

  • Train healthcare staff in patient-centered communication and empathy.
  • Ensure staff is knowledgeable about the resources available to patients.
  • Foster a culture of empathy and compassion in the healthcare environment.

By focusing on these aspects, healthcare providers can contribute to a more positive and effective patient journey. Regularly reassessing and adapting strategies based on feedback and evolving healthcare trends is crucial for ongoing improvement.

UXPressia already has some healthcare journey map examples: 

  • Surgical patient journey

This map focuses on the healthcare journey of a patient persona, Robin, from the moment when the patient understands that something is wrong to the recovery period. This journey is long and very detailed.

healthcare journey

  • Non-surgical patient journey

This map visualizes the journey of a patient, Lotta, who decides to undergo a checkup at a hospital. She schedules a visit, gets a consultation, takes some tests, and starts taking some medicine prescribed by her doctor.

journey in care

More healthcare and well-being templates are available in our library.

Wrapping up 

In wrapping up, think of patient journey mapping as a powerful tool reshaping the healthcare landscape, with the patient's experience taking center stage. It's like creating a roadmap that intricately traces every step of a patient's interaction within the healthcare system. 

This deliberate mapping isn't just a plan; it's a compass guiding healthcare organizations toward key points where they can enhance patient satisfaction, simplify access to care, and cultivate a more compassionate and patient-focused healthcare environment. Investing in patient journey mapping is more than a strategy—it's a dedication to raising the bar in care quality, amplifying the patient's voice, and ensuring that every leg of the healthcare journey is characterized by empathy, understanding, and an unwavering pursuit of excellence in patient experience.

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Book cover

Textbook of Patient Safety and Clinical Risk Management pp 117–127 Cite as

The Patient Journey

  • Elena Beleffi 5 ,
  • Paola Mosconi 6 &
  • Susan Sheridan 7  
  • Open Access
  • First Online: 15 December 2020

40k Accesses

2 Citations

The wide implementation of patient safety improvement efforts continues to face many barriers including insufficient involvement of all stakeholders in healthcare, lack of individual and organizational learning when medical errors occur and scarce investments in patient safety. The promotion of systems-based approaches offers methods and tools to improve the safety of care. A multidisciplinary perspective must include the involvement of patients and citizens as fundamental contributors to the design, implementation, and delivery of health services.

The patient journey is a challenging example of using a systems approach. The inclusion of the patient’s viewpoint and experience about their health journey throughout the time of care and across all the care settings represents a key factor in improving patient safety. Patient engagement ensures that the design of healthcare services are aligned with the values, the preferences, and needs of the patient community and integrates the real-life experience and the skills of the people to enhance patient safety in the patient journey.

The utmost priority to implement patient engagement is the training of patients. Therefore, training for both patients/families/advocates and health professionals is the foundation on which to build active engagement of patients and consequently an effective and efficient patient journey.

The chapter offers examples of successful training courses designed to foster strategic alliances among healthcare professionals and researchers with patients and their organizations. Training of patients constitutes the first step to develop shared knowledge, co-produced projects, and the achievement of active multilevel participation of patients for the implementation of patient safety in the patient journey.

  • Patient journey
  • Patient engagement
  • Patient empowerment
  • Patient safety
  • Healthcare ergonomics
  • Co-production
  • Knowledge creation

Download chapter PDF

1 Introduction

Almost 20 years after publication “To Err is Human: Building a Better Health System” (Kohn et al. 1999), patient safety is still not widely implemented. This report from the Institute of Medicine is the milestone that constituted a turning point for improving quality of care and patient safety identifying the need to rethink healthcare delivery to provide safe, effective, and efficient care.

The barriers of implementing patient safety as a driving force for change towards more effective healthcare include multiple factors: insufficient involvement of all stakeholders contributing to the care process, lack of willingness of organizations and individuals to learn from errors and scarce investments in patient safety improvement and research.

There is a growing need to promote systems approaches to finding solutions in healthcare to improve the safety of care, the quality of healthcare delivery, patients’ health and citizens’ well-being.

The discussion paper “Bringing a Systems Approach to Health” defines the systems approach as one “that applies scientific insights to understand the elements that influence health outcomes; models the relationships between those elements; and alters design, processes, or policies based on the resultant knowledge in order to produce better health at lower cost” [ 1 ].

A multidisciplinary approach must include the involvement of citizens and patients as fundamental contributors to the design, implementation, delivery, and evaluation of health services.

This means that citizen participation plays an essential role, bringing the unique point of view of patients and family members into the debate on patient safety and quality of care.

Patients and more generally citizens, when actively and systematically engaged, bring ideas and experiences which can support a collaborative and reciprocal learning process among the healthcare stakeholders. This produces knowledge that leads to improved practices, a real knowledge creation process where the dynamic participation of all actors in healthcare systems contribute to an active learning environment where the identification, the investigation, and the planning of solutions related to health incidents is a cyclic process enabling healthcare knowledge creation.

The added value of involving patients in healthcare is, respect to other more complex interventions, a low cost opportunity to take into consideration unconventional points of view creating and building knowledge and providing original insights and ideas that otherwise would not be considered.

Health professionals and patients’ skills and knowledge are acquired through individual experience or education and transferred to the health organizations in a perspective of co-production of healthcare. It is a merging of the efforts of those who produce and those who use the solutions to address health problems. It serves to establish a strengthened and long-term relationship in terms of trust and effectiveness and to distribute the responsibilities among all stakeholders [ 2 ].

In light of these arguments, the systems approach—inspired by the fundamentals of ergonomics and human factors (HFE)—creates new alliances between healthcare and engineering, of which patient journey is a challenging example [ 3 ].

Applying the systems approach to patient safety allows the analysis of the factors that characterize the encounters and the interactions between healthcare professionals and patients during the entire course of care. The observation of possible critical issues to the individual and specific encounter between clinician and patient is crucial in widening the scope of observation and research of the entire “journey” of the patient, taking into consideration the complexity of patient, their values and needs, their preferences, the economic and social context in which they live, and language and communication issues.

These observations and research should be carried out considering the interconnections and interactions together with the components of the processes; importance should be given to the context, and to manage the complexity, the value of a holistic approach.

2 The Patient Journey

A modern health system looks to the future in the context of the challenges imposed by the real world. It must manage the gap between guidelines and health protocols and what effectively happens and how reality is perceived by patients and family members.

It is more and more necessary to bring the patient’s point of view in the analysis of the care process, in the incident reporting and analysis, in the design and implementation of solutions and guidelines in healthcare.

Vincent and Amalberti in “Safer Healthcare” (2016) [ 4 ] stated that the incident analysis should broaden the class of events having consequences on patient safety. Incidents reported from the patient’s point of view should be included in addition to those suggested by health professionals. Additionally, when analyzing an incident, it should be done in the context of the patient journey rather than a single episode.

Instead of focusing on the individual encounter, it is necessary to extend the observation timeframe by applying the examination of contributing factors to each of the encounters that compose the patient journey (temporal series of encounters with healthcare facilities, a hospital unit, a specialist visit, a primary care clinic, a home health agency), considering both the negative and positive events and the points for improvement that were revealed (Fig. 10.1 ).

figure 1

Analysis of safety along the patient journey

The adoption of this wider approach is unique in that it incorporates the patient’s perspective of safety and includes new features in the incident analysis such as asking patients to recount the episode of care, including patient and family in the investigation team when possible, asking patients the contributory factors from their point of observation and perception and involving patients and families in the reflections and comments on the disclosure process [ 4 ].

The episodes patients and families can highlight are often different from those that professionals are more accustomed to reporting. However, patients could be involved in further ways in incident reporting and assessment, and today patient-derived information constitutes a free and little used resource.

As per McCarthy’s definition, “patient journey mapping describes the patient experience, including tasks within encounters, the emotional journey, the physical journey, and the various touch points” [ 5 ]. Carayon and Woldridge define “patient journey as the spatio-temporal distribution of patients’ interactions with multiple care settings over time” [ 3 ], where at each point of touch with each healthcare service along the patient journey, the patient interacts with several system elements (task interaction, physical environment, interaction with tools and technologies, organization interaction, interaction with other organizations and other people, interaction with other people and teams within the organization) (Fig. 10.2 ).

figure 2

The patient journey as a set of interactions and transitions

The patient journey represents the time sequence of what happens to the patient, especially during transitions of care, in particular considering that the health professional who takes care of the patient only sees the portion of care for which he is responsible and in which he has an active role. Conversely, the patient is the only person who has a continuously active and first-hand role during their health journey. They alone are in possession of information that characterizes the entire care experience.

Moreover, when patients navigate their journey, they contact and interface with multiple work systems at several time points, where the sequence of interactions in the work systems determine the outcome experienced by patients and families, healthcare professionals, and health organizations. (Fig. 10.3 ). Each local work system is influenced by a wider socio-organizational context, which can be formal healthcare organization (such as hospital, primary care facility, nursing home) or informal (home).

figure 3

SEIPS 3.0 model: sociotechnical systems approach to patient journey and patient safety

Every point of the patient journey offers data on health outcomes and patient experience outcomes that should be used as feedback to redesign healthcare work systems in terms of adaptation, learning, improvement.

Patient’s experience represents an important resource in participatory collaborative design, especially in the patient journey where this experience is the result of multiple interactions across space and time.

3 Contextualizing Patient Safety in the Patient Journey

Many of the incidents or near-misses during healthcare are not due to serious errors, but to the combination of small failures, such as limited experience of a recently qualified doctor, use of obsolete equipment, an infection difficult to diagnose or inadequate communication within a team.

We know that the analysis of an incident requires looking back to the succession of events that have occurred and that led to the problematic episode, considering both active and latent errors, and all the aspects connected directly or indirectly. It is fundamental to examine the safety of the entire patient journey, all the encounters that make up the entire care process, to study the whole medical history of the patient in an attempt to reconstruct all the elements that characterize the “health journey”, not only from the viewpoint of the health professionals, but also from that of the patient and family.

In light of these arguments, new concepts, tools, models, and methods need to be embraced to support patient safety in the patient journey.

A significant contribution in terms of concepts, frameworks, and models is offered by Industrial and Systems Engineering, and often human factors and systems engineering (HF/SE) have an approach to include the preferences and the needs of stakeholders when designing solutions to address the critical aspects of a health process.

Human factors and ergonomics are described as “the scientific discipline concerned with the understanding of interactions among humans and other elements of a system, and the profession that applies theory, principles, data and methods to design in order to optimize human well-being and overall system performance. Practitioners of ergonomics and ergonomists contribute to the design and evaluation of tasks, jobs, products, environments and systems in order to make them compatible with the needs, abilities and limitations of people. Ergonomics helps harmonize things that interact with people in terms of people’s needs, abilities and limitations” [ 6 ].

Process models have found widespread use in drug management, visit planning, care transition, to name a few, and can offer tools and methods to investigate interprofessional and physician–patient communication, interruptions and health information handover.

Drawing from the finding of Carayon’s studies [ 3 ], the Systems Engineering Initiative for Patient Safety (SEIPS) model gives a description of five work system elements which when applied to a definite patient journey model should outline who (person) is doing what (tasks) with tool and technologies, taking into consideration the physical and organizational environment where all these activities take place. All these factors have to be examined for both patients and workers and the process analysis and modelling have to consider what patients and families/caregivers, healthcare professionals and workers actually do ( work-as-done versus work-as-imaginated ).

Patients, families, and caregivers are deeply involved in the healthcare process due to the tasks they carry out in the intermediate sectors of care between encounters. Away from direct interactions with professionals, they have to perform multiple actions requiring understanding of what behaviour to adopt, which instructions to follow, how to administer a medication and how to communicate with hospital doctors, general practitioner, and home healthcare professionals [ 3 ].

Taking into account what has been highlighted so far, one of the leading and most challenging keys to success in improving patient safety is to adopt a systems approach to patient safety which includes the patient’s perspective about their health journey throughout the time of care and across all the care settings.

This assumption highlights that patients and their families are valuable resources and can play an important role in patient safety improvement efforts. Viewing health systems as “co-producing systems”, patients can engage as partners in co-producing patient safety improvement activities individually, in groups and collectively. Individual patient and family member participation/co-production of safer care is fundamental. Equally as important is the co-management and co-governance of healthcare services, in addition to the engagement of communities in policy definition and designing activities.

In fact, patient engagement directs the design of healthcare systems towards the preferences, the values, the real-life experiences, and—not less important—the skills of the people to enhance patient safety in the patient journey.

Such a change of perspective involves multiple dimensions of interactions and relationship between patients and professionals, encompassing cooperation, dialogue and listening, trust, reciprocity and peer-to-peer work [ 2 ].

It follows that on the one hand the healthcare organizations have to demonstrate the willingness to support health professionals to effectively engage patients in the patient journey to achieve the common goal of reducing the risk of patient harm or incidents as well as the willingness to integrate patients and family members as partners into quality and safety improvement efforts. On the other hand, it is necessary to motivate and encourage patients and families/caregivers to actively participate during the individual care process for safer care as well as partner in organizational patient safety improvement efforts to ensure safer care for others.

The working group Patient and Family Involvement for the delivery of Safe and Quality Care [ 7 ] stated that the utmost priority to realize the patient involvement is the training of patients, followed by the promotion of interdisciplinary training programmes for healthcare professionals to promote patient and family engagement, the implementation of multilevel structures that allow for participatory processes by patients and smarter allocation of resources in healthcare that supports involving citizens in patient safety improvement efforts for better healthcare.

This working group was part of the activities of the “1st International Meeting about Patient safety for new generations—Florence, 31st August and 1st September 2018” organized by the Centre for Clinical Risk Management and Patient Safety, Tuscany Region—WHO Collaborating Centre for in Human Factors and Communication for the Delivery of Safe and Quality care [ 7 ].

Therefore, training for both patients/families/advocates and health professionals is a pillar on which to build active engagement of patients and consequently an effective and efficient patient journey. From this perspective, the participation of patients (i.e. representatives of patients’ associations and organizations, patient and citizen advocates) in training courses—specifically designed for this target audience of trainees and aimed to encourage co-production of care—is an essential and effective activity to co-produce a better healthcare system in terms of quality and safety of care.

Sharing a common language, promoting citizens’ and patients’ awareness of importance of co-production of care, teaching the key role that patients can play in making treatments safer (investments in health literacy), learning to work together and within a network (locally, regionally, and nationally/internationally) on priority safety and quality of care issues: these are some of the main strengths of training courses aimed to be at the basis of active engagement of patients and citizens.

Examples of successful training courses include “PartecipaSalute” and “Accademia del Cittadino” organized in Italy by Laboratory for Medical Research and Consumers Involvement of the Istituto di Ricerche Farmacologiche Mario Negri IRCCS and the Centre for Clinical Risk Management and Patient Safety, Tuscany Region. The following paragraph describes this educational experience which is specifically designed for citizens and patients to improve their knowledge and skills in patient safety and quality of care, with the aim of co-producing better healthcare services.

4 From PartecipaSalute to the Accademia del Cittadino: The Importance of Training Courses to Empower Patients

Over the last few years in the field of health and research and with regard to participation and involvement of citizens and patients, we have witnessed the transition from a paternalist to a partnership model. Individual citizens and those citizens involved in patients’ associations or groups have acquired a new role: no longer passive but actively involved in decision-making regarding health, healthcare, and research in the health field [ 8 , 9 ].

This is a progressive step-by-step process based on the recognition and implementation of the key concepts such as health literacy and empowerment. Health literacy, more properly used at individual level is defined as the capacity to obtain, read, understand, and use healthcare information in order to make appropriate health decisions and follow instructions for treatment [ 10 ]. Empowerment, more used at the community level, is a process that, starting from the acquisition of accurate knowledge and skills, enables groups to express their needs and more actively participate to request better assistance, care, and research. At this level, the availability of organized independent and evidence-based training courses is essential to allow people to be able to critically appraise and use information about the effects of healthcare interventions. Consequently, they will have the skills to participate in the multidisciplinary working groups (composed of researchers, health professionals, patient and citizen advocates, institutional representatives).

In the late 1990s, the Istituto di Ricerche Farmacologiche Mario Negri IRCCS held the first training courses of this kind focused at breast cancer associations. Some years later, within the project PartecipaSalute—a not-for-profit research project designed to foster a strategic alliance among healthcare professionals, patients, and their organizations—an ad hoc training programme for representatives of citizens’ and patients’ organizations was defined with a multimodule format [ 11 , 12 ]. This was an innovative approach, at least in the Italian setting in that period.

PartecipaSalute training programme has combined different experiences: the Mario Negri Institute IRCCS experience in collaborative research activities with patients’ associations, the Italian Cochrane Centre with the activities aimed at promoting the principles of evidence-based medicine, and Zadig long-term experience in health communication. The above promoters jointly developed the PartecipaSalute training programme on the belief that data are more important than opinions, and that every decision should be supported by well-conducted research data.

The spread of this belief to patients and citizens with the purpose of stronger involvement was a key point of PartecipaSalute training courses.

Therefore, patient, family, and community knowledge of the principles of how evidence is developed through clinical research is essential to make or support decisions in the health debate, to promote better clinical research, or to convey correct information. The strength of the PartecipaSalute programme was based on the exchange of experiences in an interactive way aimed at creating opportunities for discussion, overcoming the teacher–learner model. Each session started with an interactive discussion of a real situation—such as a screening, vaccination, therapy—and after sharing data, opinions or articles from media, evidence was presented and discussed, underlining significant methodological aspects. The programme offered the opportunity to debate the value and significance of the methodology offering critical appraisal tools. Each participant was invited to take an active part, starting from direct personal or associative experience. Table 10.1 presents the topics considered in the first three editions of the training programme. The participation was free, and different types of materials were provided including an ad hoc manual published by PartecipaSalute, copies of the PowerPoint presentation and articles.

Considering the characteristics of the programme and its modular structure, the PartecipaSalute training programme could be adapted to specific contexts. In fact, the experience of PartecipaSalute was adopted at the regional level by Regione Toscana (Centre for Clinical Risk Management and Patient Safety and the Quality of healthcare and Clinical pathways of Health Department, Tuscany Region) developing a more specific training programme called PartecipaSalute-Accademia del Cittadino (Academy of Citizen), focused on patient safety and risk management. In particular, after some modules on methods related to evidence-based medicine, uncertainties in medicine and information and communication in health, the training was mainly dedicated to regional and local activities on clinical risk management, the role of patients’ associations to improve patient safety and to support the implementation of best practices, the analysis and data of adverse events and risk assessment in terms of quality and safety in the care processes (Table 10.2 ).

The PartecipaSalute-Accademia del Cittadino joint training programme has been implemented in three editions over the last decade and has trained about 100 members of patient and citizen advocates representing 38 patients’ associations. The courses ranged from 5 to 3 modules of 2 days each in residential mode to allow participants to get to know each other and create a network of associations committed to be engaged in clinical research, quality, and healthcare safety issues.

The entire educational experience was characterized by the use of participatory training methods, based on working groups, practical exercises, lectures from experts with opportunities for discussions. As a result of this training course model, the participants were recognized as “expert patients” and were regularly involved in basic activities for promoting patient safety as auditors on significant events and helping to define policies on patient safety at the Tuscany regional level. In addition, they have participated in patient safety walkarounds in hospitals and in developing eight cartoons intended to promote the education of citizens for the prevention of the most diffused risks (such as prevention of infections, prevention of falls and handovers).

Feedback on the satisfaction on tutors, topics discussed and knowledge gained was regularly requested from participants through questionnaires distributed before and after the programme. In general, positive feedback was received; participants appreciated the interactive methods of work, the clarity of the language, and the effort to make difficult problems easy to understand. An ad hoc questionnaire was provided to the participants regarding the methodology of clinical research, always showing an improvement in the self-evaluated knowledge before and after the course. Feedback of the results of the evaluation was also shared with each participant. Most of participants reported their experience to other members of the organization. In particular, in the case of the Regione Toscana training, the possibility of immediately transferring what was learned in the course in all the activities in collaboration with the health institutions, policy makers, and health professionals—such as working groups on patient safety best practices, participation to audits, development of tools to improve health literacy—was appreciated.

Some limitations emerged from these experiences. The selection of participants is the first issue, not only because the training course is accessible to a small number of participants (in general no more than 30 participants), but also because the groups comprised of middle-aged and retired participants, with few younger ones. Additionally, there were few individual patient or family member representatives from patient associations. The majority of those representing patient associations were in managerial or leadership positions. Furthermore, it is difficult to choose between small, local, or bigger regional associations. Residential training courses also restricted the participation for geographical reasons.

The PartecipaSalute and ParteciaSalute-Accademia del Cittadino training experiences show that patients and citizens are willing to get actively involved in healthcare and the research debate. There is a real desire to improve their knowledge and skills on health and research issues and allow some general considerations regarding the active engagement of citizens representing associations and advocacy groups.

In conclusion, it is very important to invest in a process of empowerment aimed to have well-trained activists involved vigorously and constructively in the debate, design, and assessment of health and research. Switching from tokenism to active participation is necessary to effectively partner with patients and the general population to design, plan, and co-produce safer more effective healthcare, while also supporting better more patient-centred research [ 13 , 14 ].

Also, the training courses are feasible and useful, as has recently been discovered also by pharma or other groups that organize courses mainly focused on drugs and drug development, thus directing the participation of the groups more to market needs than to public health.

Furthermore, this training initiative facilitates the networking among associations in part overcoming the difficulties that derive from personalization and division among the associations representing citizens and patients.

Finally, this illustrates the importance of the design and promotion of training courses with institutions, such as the Regione Toscana, in order to be able to implement projects of real collaboration between institutions, healthcare professionals, and consumers’ and patients’ representatives.

5 Recommendations

A systemic approach to health can provide valuable models for wider implementation of patient safety. A multidisciplinary approach includes the involvement of citizens and patients as unique stakeholders in the design, implementation, delivery, and assessment of health services.

Involving patients in healthcare is an opportunity to bring uncommon points of view into policy making and to create shared knowledge between healthcare professionals and patients.

The implementation of patients’ and families’/caregivers’ perspectives in the patient journey is the golden opportunity to leverage crucial input, such as experiential knowledge, safer care, patient motivation, and trust and social cohesion into the co-production of safety solutions in healthcare. This represents a way to get closer to person-centred care, to create opportunities for patients to meet and share information and knowledge, to develop structures and policies for patient involvement at different levels (with healthcare systems, universities, and policy makers).

However, little has been done to overcome some healthcare systems barriers: the power imbalance between the doctor and patient, language differences, the lack of diffusion of non-technical skills and, last but not least, the lack of evidence about the value of patient involvement.

To be widely implemented, patient engagement in the patient journey requires courageous leadership, organizational efforts, a wider culture of safety of care, the implementation of multilevel structures for the engagement of patients and resources from smarter spending in healthcare.

Education is the landmark to integrate meaningful patient and citizen engagement in healthcare. Training of patients is the fundamental starting point to develop shared knowledge, co-produce projects, and implement an active multilevel participation of patients and families for the improvement of quality and safety of care.

Kaplan G, Bo-Linn G, Carayon P, Pronovost P, Rouse W, Reid P, Saunders R. Bringing a systems approach to health, Discussion Paper. Institute of Medicine and National Academy Engineering. 2013.

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Driving growth through consumer centricity in healthcare

Rising consumer centricity in the United States is an inexorable force that’s shaking up virtually all consumer-facing industries. Far from being immune to its effects, the healthcare industry is confronting an imperative not only to meet the evolving demands and expectations of consumers across the end-to-end healthcare journey but also to mirror the experiences consumers commonly enjoy when engaging with other sectors. Our research reveals that consumers are placing a higher priority on their wellness than in the past, while expressing continued frustration with the healthcare system. 1 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Meanwhile, incumbent health systems face a host of vexing challenges, including record inflation, supply chain disruptions, persistent workforce shortages, and the growing presence of new tech-enabled disruptors. 2 “ The gathering storm in US healthcare ,” McKinsey, October 8, 2022.

Making the changes needed to become more consumer-centric is incredibly difficult for healthcare companies, given core industry dynamics and a rapidly evolving care and coverage landscape. However, a large majority of industry executives acknowledge its importance. Ninety percent of surveyed healthcare provider executives and 100 percent of surveyed chief marketing officers identified healthcare consumerism as a top priority for their companies. 3 2022 McKinsey Healthcare Provider C-Suite Survey. To achieve their consumerism objectives, healthcare incumbents are looking at retail, tech, and other consumer sectors for inspiration to develop innovative solutions to well-known healthcare pain points across the end-to-end healthcare journey and to build trust-based and enduring consumer relationships.

This article discusses the steps along the healthcare journey and the adverse consequences that result when consumers defer care because of poor healthcare experiences. It also discusses the role of disruptors, reimagines several healthcare steps, and offers considerations for incumbent healthcare companies to deliver a better consumer experience and, by extension, improve outcomes and reduce costs.

Eight discrete journeys define the end-to-end consumer healthcare experience

Consumers have no shortage of pain points that healthcare payers and providers could address to better meet their needs. But reimagining healthcare through a consumer lens starts with understanding that consumers have widely divergent experiences with healthcare and attach different levels of importance and satisfaction to the eight steps they take along the healthcare journey (Exhibit 1). Even for a single step, such as getting insurance coverage or finding care, consumer perceptions of importance and satisfaction vary widely. For example, shopping and signing up for coverage is more important for consumers with noncommercial coverage than for those with commercial coverage. Medicare and Medicaid members attach equivalent levels of importance to the experience of getting coverage, but Medicare members are far more satisfied with that experience. 4 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Given these differences, it is critical to understand consumer needs at a granular level and to contextualize their experiences.

Overall, consumers indicate that four healthcare journeys—getting coverage, understanding benefits, finding care, and saving and paying for care—are of high importance yet deeply unsatisfying. Notably, all of these journeys take place either before or after consumers actually receive care from providers.

Care deferral has serious consequences for consumers and health systems

Given the challenges of navigating today’s healthcare journeys, it is no wonder that nearly a quarter of US consumers have reported deferring healthcare. 5 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021. Applying consumer-oriented solutions to common pain points could encourage more consumers to receive the care they need with care teams they trust.

Care deferrers by the numbers

Some populations—specifically the middle-aged, immigrants, 6 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021. urban residents, households with children, and those unsatisfied with their primary care physicians—reported more than others that they have deferred care. 7 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Consumers who reported they have deferred care suffer more than their care-seeking peers from existing health issues or mental-health challenges: approximately 80 percent reported chronic conditions. 8 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Furthermore, consumers who have deferred care reported receiving less routine preventive care, including flu vaccinations (23 percent among deferrers versus 32 percent among nondeferrers) and annual wellness visits (19 percent versus 31 percent). They also reported deferring care for a range of health needs, including dental (33 percent), vision (18 percent), and specialist care (17 percent). 9 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021.

More than one-third of care deferrers who visited an emergency department or urgent-care site in the previous 12 months reported five or more visits during that time; only 10 percent of those who do not defer care reported equivalent frequency of use.

Health system emergency departments are disproportionately affected

Consumers who defer care have a substantial impact on emergency department (ED) and urgent-care use. Thirteen percent of care deferrers reported an emergency room visit, and 16 percent reported using urgent care—as compared with 11 percent and 9 percent, respectively, for nondeferrers (Exhibit 2). 10 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021. Furthermore, more than one-third of care deferrers who visited an ED or urgent-care site in the previous 12 months reported five or more visits during that time; only 10 percent of those who do not defer care reported equivalent frequency of use. 11 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021.

Emergency and urgent-care sites also tend to have lower patient experience scores compared to other sites of care, including up to ten percentage points lower in satisfaction rates compared with primary care. Thus, patients who defer care are most often engaging with the least satisfying and most costly care sites when they ultimately seek care. Negative experiences simply reinforce the cycle of care deferral. 12 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021; McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022.

Finally, each year, approximately $8.3 billion is spent in the United States on emergency care that could be provided in another care setting. 13 Rich Daly, “Preventable ED use costs $8.3 billion annually: Analysis,” Healthcare Financial Management Association, February 11, 2019. The largest driver of avoidable emergency-care spending is unnecessary ED use for mental illness ($4.6 billion) and hypertension ($2.3 billion). 14 Rich Daly, “Preventable ED use costs $8.3 billion annually: Analysis,” Healthcare Financial Management Association, February 11, 2019.

Care deferrers have poorer outcomes at higher cost

Health outcomes and costs are worse for consumers who defer care. Sixty percent of surveyed clinicians indicated that deferred care led to an increase in complications, 30 percent reported an increase in mortality, and 55 percent noted an increase in self-medicating and forgoing necessary prescriptions. 15 McKinsey 2022 Physician Survey.

Fifty percent of surveyed clinicians also indicated that site-of-care costs are higher for care deferrers, 16 McKinsey 2022 Physician Survey. mainly due to higher use of emergency or urgent care.

An improved experience can better engage consumers who are delaying care and lead to better outcomes and reduced costs. For example, the saving and paying for care journey has a particular impact on deferred care, with more than one-third of deferrers citing cost as their primary barrier. 17 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021. Consumer-centric journeys (including those that improve the transparency of healthcare costs; help consumers navigate to the highest-quality, lowest-cost care options; and provide care navigation to those at highest risk) could help to address this cost-of-care barrier and lead to better outcomes for consumers and the health system. 18 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021.

Bolstering consumer trust in the healthcare system could encourage more consumers to seek needed care.

Likewise, bolstering consumer trust in the healthcare system could encourage more consumers to seek needed care. Many consumers believe that the health system does not support their care needs, and they perceive that the quality of their healthcare is negatively affected by their personal attributes, including income, insurance coverage, weight, and age, among other factors (Exhibit 3). Specifically, some consumers feel that, because of who they are, they are misunderstood (21 percent of consumers report that their providers do not listen to them or understand their needs), disrespected (22 percent of consumers report feeling treated with less respect than other patients), or victims of bias (28 percent report that they feel healthcare providers have made assumptions about them that influenced how they were treated). 19 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Addressing those concerns could help build trust-based relationships that could encourage consumers to get the care they need.

Building deeper trust-based relationships involves looking across the full range of healthcare participants. Most consumers view a broad range of care professionals as part of their care team, and a material number are continuing to turn to digital care. For example, 50 percent of polled consumers are interested in virtual behavioral healthcare. 20 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. For populations that defer care, building this trust will mean going beyond traditional care channels.

Reimagining the end-to-end healthcare journey

Addressing consumers’ evolving expectations is difficult and often requires reimagining traditional healthcare journey offerings (Exhibit 4).

In the not-so-distant future, we can envision a dramatically healthier population, empowered to make better decisions, with more convenient, affordable, and timely access to the care they need and want. Healthcare companies could enjoy improved performance through more affordable products, higher-quality care and experiences, an increase in consumers served, and more consumer loyalty to their improved brands.

Addressing consumer pain points can unlock better outcomes: satisfied consumers report deferring care ten percentage points less, getting routine care 14 percentage points more, and using inpatient care 13 percentage points less than unsatisfied consumers. 21 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021; McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Ultimately, consumer health improves. Additionally, more-engaged consumers report staying with their current insurer and provider and paying their bills. 22 McKinsey Consumer Health Insights 2021 Provider CX and 2019 CX Payer Surveys.

Innovators are already starting to show the way as they seek to understand consumer pain points, address them at scale, and communicate their proposed solutions directly to consumers, often before consumers typically seek care. This creates the potential to disrupt some healthcare incumbents and the traditional healthcare journey. Other incumbents and disruptors have been able to deliver distinctive experiences at scale that better support patients and drive value for the health system. Consider these case studies:

Transparent healthcare billing. Nearly all consumers rate the payment experience as a key factor in deciding whether to return to a provider, according to one industry leader. More than one-third of consumers are unsatisfied with the lack of alignment between their bill and the explanation of benefits. 23 “2021 healthcare consumer experience study,” Cedar, accessed February 2, 2023. Industry innovators have improved the billing journey by providing cost transparency before and after visits and by using payer–provider integration to create a frictionless and customized payment process (Exhibit 5). One industry leader reported that fostering radical cost transparency and payment simplicity led to an 88 percent patient satisfaction rating and a 30 percent average lift in patient payments. 24 “2021 healthcare consumer experience study,” Cedar, accessed February 2, 2023.

Consumers empowered and engaged in managing their wellness. According to one industry leader, personalized, at-home care plans offered via digital tools can more easily connect consumers with the care they need and can address access concerns by supporting the 3.6 million individuals who struggle to secure transportation to in-person medical care. 25 “State of MSK 2022: Trends impacting musculoskeletal care in America,” Hinge Health, 2022. Easily accessible preventive wellness programs, in which patients are connected to a personal health coach, can engage consumers early and often in their care journey and reduce the likelihood of future surgical interventions and the seeking out of emergency care. In one case study, nearly three-quarters of the patients enrolled in a company’s comprehensive musculoskeletal wellness program completed the program, with more than half of participants experiencing a reduction in pain (Exhibit 6). 26 Vibhu Agarwal et al., “Digital care for chronic musculoskeletal pain: 10,000 participant longitudinal cohort study,” Journal of Medical Internet Research , May 2020, Volume 22, Number 5.

Incumbent healthcare companies have an opportunity to redefine the consumer experience

Healthcare companies can consider taking action on multiple fronts to improve consumers’ experience with healthcare systems:

Define a common purpose, and deeply commit to serving consumers’ needs. Unsurprisingly, consumers regularly point to consumer-focused companies in other sectors as setting an example for healthcare companies. Consumers want healthcare that includes personalized offerings and services, value-based pricing, and an elevated experience—all from distinctive, high-quality brands.

Understand consumers. Today, healthcare consumers need a healthcare system that helps them get the care they need from care providers they trust, with the goal of supporting their health as a whole. Although the specifics vary widely by consumer segments, certain design pillars can provide a foundation on which healthcare companies can build to satisfy these needs. These pillars include providing access to convenient, affordable, and equitable care; transparently sharing information; and providing incentives that support consumers’ active and ongoing engagement in their health.

Consumers today seem to be particularly receptive to engaging with the healthcare system. Nearly half of consumers are prioritizing their overall wellness more now than before the COVID-19 pandemic, although two-thirds also indicate that their wellness has either declined or remained the same in the past three years. 27 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Among consumers who place a very high or moderately high priority on wellness, more than 80 percent report prioritizing better health overall, better sleep, nutrition, mindfulness, and fitness. 28 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Moreover, consumers look to the healthcare system to meet these needs: more than 40 percent of consumers want support from clinicians to reach their health, sleep, and nutrition goals, while the share of consumers seeking support from other sources is nearly half that. 29 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022.

Focus on what matters, and measure it. With a deeper understanding of consumers’ needs and expectations, healthcare companies can then focus on what matters most to consumers. Importantly, this is highly dependent on the population segment and the overall context of their healthcare experiences. Although fully understanding consumers requires targeted research and deep insights, healthcare companies can consider addressing several key trends.

First, as described earlier, consumers want easy access to affordable and convenient care. Those who are satisfied with their access to necessary care report lower rates of care deferral, higher rates of engaging in routine care, and lower rates of receiving inpatient care than those who are unsatisfied. 30 McKinsey 2021 Consumer Health Insights COVID-19 Wave 5 Survey, June 14, 2021; McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022. Second, consumers want meaningful, trust-based relationships with their care teams. Six times more consumers with longitudinal-care-team relationships and care continuity report engaging with their primary care physician for future health needs. 31 McKinsey Consumer Health Insights 2021 Provider CX Survey. Third, consumers want holistic support for their overall wellness and are prioritizing health and wellness more now than they did three years ago. 32 McKinsey 2022 Consumer Health Insights COVID-19 Wave 1 Survey, March 25, 2022.

Disrupt internally. Rather than waiting for others to define solutions, incumbents can consider making necessary changes themselves. The pace of innovation in healthcare may continue to increase, fueled by strong private-equity and venture capital investment focused primarily on healthcare technology and consumers. Based on McKinsey analysis, there were more than six times as many tech-focused healthcare deals in 2021 as in 2014, and consumer-related profit pools are expected to be among the highest growth areas in the industry (with a 10 percent increase in growth by 2025). Broadly, private-equity and venture capital deal growth within healthcare services outpaces the US industry average (29 percent growth in the healthcare sector versus 2 percent average growth across industries), according to our analysis.

Healthcare companies can use iterative, test-and-learn design thinking to rapidly identify and act on opportunities to improve the consumer experience. Consumer-centric healthcare companies drive more than twice the revenue growth as companies in the same industry with lower patient satisfaction scores. Importantly, companies that lead in consumer experience rebounded from the COVID-19 pandemic stronger than companies that deprioritized consumer experiences, with consumers returning to trusted brands, according to our analysis.

Healthcare companies have an opportunity to take the lead in transforming the healthcare journey and, in doing so, could unlock material value for consumers and the overall healthcare system. They can start with a clear and strong consumer-centric aspiration that is grounded in empathy and then can pursue available opportunities at every point of the end-to-end consumer journey. For example, consumers want better health and wellness, but many are not achieving their goals. Some groups disproportionately face barriers to care access; many also feel unsupported by the health system. Beyond a clear aspiration, meaningful transformation also requires a deep understanding of—and intentional focus on—the outcomes that matter most to consumers, which can act as a North Star to guide the design of the healthcare journeys of the future.

The time to act is now. Rapid innovation is already transforming the healthcare consumer experience, and the pace of disruption could increase, fueled by accelerating investment from private-equity and venture capital companies. The whole industry has an opportunity to embrace this change, seek to deeply understand the healthcare consumer, and lead the way in designing the healthcare experience of the future.

Jessica Buchter is an associate partner in McKinsey’s Philadelphia office, Jenny Cordina is a partner in the Detroit office, and Mark Lee is a consultant in the Minneapolis office.

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Patient experience sparks nursing career: A journey of healing, caregiving

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Up until age 10, Charleston-born Jesse Dasinger’s life was typical for a 5th grader. But one day in the fall of 2010, everything changed. A trip to the emergency room, and later a confirmed cancer diagnosis at MUSC, unveiled Dasinger had T-cell acute lymphoblastic leukemia (ALL), a type of leukemia that occurs when too many of the body’s T-cells are produced in the bone marrow. 

Immediately, he was connected with the best care from pediatric oncology specialists Jennifer Jaroscak, M.D., Michelle Hudspeth, M.D., and Jackie Kraveka, D.O., and the teams of nurses and others who cared for him. Dasinger’s leukemia did not respond to standard treatments and required a novel chemotherapy regimen followed by an intensive cord blood transplant in 2011. 

The combination of receiving quality patient care, coupled with the compassionate support of his parents, Judy and Willie Dasinger, and family and friends, helped Dasinger not only to beat his cancer, but it inspired him to pursue a career in nursing at MUSC.

“I’ve always wanted to work a job that served others. As a 10-year-old staying for months in the MUSC Children’s Hospital, I saw the day-to-day interaction between the clinical teams — the doctors, nurses and staff. But it was the nurses who were the one constant that were with me and my parents as I experienced the tough and difficult moments to the good and happy times. They were my caregivers, my advocates, my cheerleaders and my bedside companions that were important to me at that time, and I’d never forget it.”

And he didn’t.

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Going through high school, he realized he wanted a job in medicine and specifically nursing.

“I wanted patients that I help to experience those same good feelings that I experienced. I felt I was treated so well as a patient that I wanted to ‘give back’ to the community in the same way I was treated. This is why I wanted to be a nurse,” he explained. 

In February of 2021, he took a job as a patient care technician (PCT) working on 5East in the Cardiac Acute Care Unit of MUSC’s Ashley River Tower to learn more about nursing and determine if it was something he wanted to do.

The 5East team manages recovering heart patients, transplant patients, vascular and other specialty patients. What he learned and who he worked with inspired him even further.

“What I love is that the 5East nurses are a team and work together to do an amazing job with patients every day. That experience helped me realize ‘this is what I want; this is what I’ll be doing,” Dasinger said.

About a year later, he was accepted into nursing school at ECPI, and just like many other students balancing work and training during the COVID-19 pandemic, Dasinger navigated through challenging situations that helped him to recognize how empowering it was to work in a hospital, especially at such a critical time. 

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“To me, patients were coming to MUSC from all over the state for help during their sickest, most vulnerable time in their lives, and we’re here to help them. It was an amazing example of humanity at its best!”

He also witnessed many challenges faced by his fellow care team members. “There were tough days, too, but people I worked with were still great and positive. They still inspired me to move forward to study nursing. They just cared so much for the patients,” Dasinger said.

Last November, he graduated from nursing school and was able to return to MUSC. He eventually rejoined the 5East team as a full-time nurse. He loves working with his team and with patients. His short-term goal is to further his education with a master’s degree in nursing education and become a clinical instructor at MUSC’s College of Nursing.

Nurse manager Rachel Jakins, R.N., couldn’t be more pleased with Dasinger and all he brings to the 5East team. 

“Jesse is a compassionate and calming force on the unit. I receive so many compliments during my leader rounds about Jesse’s bedside manner and how he always makes each patient feel important, heard and that he genuinely cares about their well-being. He’s a wonderful addition to our staff, as we all work so well together. We truly are a family, and everyone supports one another,” said Jakins. 

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Hudspeth, who was among the MUSC pediatric specialists who treated Dasinger 13 years ago, still keeps in touch with her former patient-turned nurse.

“I couldn’t be more pleased to see Jesse join the medical profession. He will be an outstanding nurse. He represents the very best of what we strive for every day to accomplish in pediatric oncology — to cure patients and allow them to return to a normal life where they can fulfill their dreams and help others,” she said. 

From a young boy who battled leukemia during months spent in the MUSC Children's Hospital to a dedicated nurse who provides invaluable support to his patients, this nurse's incredible journey has come full circle, bringing immense comfort to those under his care. 

“I love MUSC. Nursing was part of my life every day for months and it drove me to do what I wanted to do then, and what I am today,” he said.

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405 Lake Zurich Road, Barrington, IL 60010

(800) 558-0653 (Call a Family Advisor)

( 38 reviews )

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Reviews of JourneyCare in Barrington, Illinois

January 30, 2023

my husband was with journeycare for 18 months. the last 3 days of his life were horrendous. our nurse stopped coming (yes we had a substitute but not the same as the person who patient knew) with no explanation right after Christmas. as my husband deteriorated I called asking for help. the final week of his life an LPN who had never seen us before came to 'help'. she didnt even now how to get blood oxygen and asked me to use my apple watch. Her solution?Senna for constipation. Really??? I called through that weekend and got info on meds to use but no in person help. this was horrendous both for the caregiver and patient. He suffered needlessly. it seems the attitude was we had been in the system too long and they'd lost interest.

January 26, 2023

I would like to give this hospice a great review, but I doesn't deserve one. The nurses and the CNAs are all excellent, they could not be better. They are the best of the best. The administration is a very different story. My husband was in hospice with this agency. The agency provided the absolute worst service I have ever experienced. Approved drugs for hospice are supposed to be no charge through Medicare. Mine were all submitted to my health insurance and I was forced to co-pay despite, asking the agency for help several times! The WORST thing that they did was lose the DNR with the doctor's signature. This was not discovered until the last last 48 hours of my husband's life. Instead of a peaceful death vigil, I had a 3 AM visit from a hospice employee asking me to sign a new DNR and maybe they could get a doctor's signature. DO NOT CHOOSE THIS HOSPICE!

April 7, 2022

My father-in-law was admitted for final hospice care at the Barrington facility a few days ago. The staff was wonderful and respectful of what we were going through. If you have to die, this is the place to go.

February 7, 2022

AVOID THIS ORGANIZATION. My sister in law was under their care. In the last few days of her life, she was unresponsive and in obvious distress. We phoned to request a nurse. The nurse never came out and told us to continue with the medication protocol that was established. We told the nurse that the current medications were not keeping her comfortable. She was in visible pain. We were on the phone for over an hour with the nurse who just kept saying to continue doing what we were doing. We kept telling her that it wasn't working. We had to plead with her to get in touch with the doctor. Finally, she said she spoke with the doctor and came back to us and said they were not going to make any changes to the medication. At that point, we were able to get in touch with our primary oncologist who walked us through a protocol with the meds we had on hand. Had we not had an amazing oncologist that answered her phone at midnight and walked us through all the steps to take to keep our relative comfortable, our loved one would have continued to suffer. This was the most egregious offense. There were a couple others in prior days. THESE ARE NOT THE PEOPLE YOU WANT OVERSEEING THE LAST DAYS OF YOUR LOVED ONES.

Tammy Uncle

June 26, 2021

While my mom was in her last days of life, Journeycare never went to the nursing home to be with her, (she was in their hospice care every two weeks for 6mos) and never reached out to me as she was dying. I had to coordinate everything with the nursing home (who were extremely supportive, by contrast). I would not recommend JourneyCare, especially if you live away from your loved one.

December 20, 2020

JourneyCare provided the best possible scenario to care for my mother (and family) during her final days. Outstanding setting (Barrington location), program and care. It was a blessing.

June 13, 2020

Can't say enough great things about their in-patient center in Barrington. Didn't know what to expect, but the facility, nurses, Drs all exceeded expectations. JourneyCare will take VERY good care of your loved one, so you don't have to worry about anything in their last days of living. THANK YOU JOURNEYCARE.

schroedermom

February 21, 2020

My mother having been through this company in SYCAMORE,IL has been a wonderful experience I cannot say enough good things about the nursing staff and the Therapy staff that's come into her home over the past several months, they are all wonderful and extremely compassionate individuals dedicated to there patients care as well as their job. What I do find upsetting is that the office staff and management can not seem to properly run the office in Sycamore, that they're more willing to let these great individuals go and let several patients who depend on this great quality care down. Really sad to see office staff can't get there crap together and my 75 y.o. mother has to now be either discharged or referred out to individuals that are now strangers and start from scratch. I'm angered that you gave up on your patients rather then weeding out the bad apples and replacing them with good ones.

November 2, 2019

my mother received Pallative care thru Journey Care. The provider Lila Corral ignored my attempts to communicate with her, and then told me to take my concerns up with the office. The only thing I had asked was an update on how my mother was doing. It took me 2 months to get a return e mail, and then only when I contacted the office. I have no idea what she did with or for my mother, as she refused to tell me. The office was kind , helpful and responsive(Abbie ) and has referred me to hospice, where hopefully things will be better.

July 16, 2019

Although the Barrington facility is impressive, I am not entirely happy with some of the staff. Yesterday I went home feeling defeated and disrespected. I believe the staff could benefit from some social skills training. If I had to do over again, I would not have opted for this.

June 11, 2017

Both my mom and dad were in hospice with Journey Care. My mom and dad were in residence at my home and we had a full time caregiver at each given time of need. With my father who passed first- he was not in pain and I never had to give him the morphine nor was I pressured to give it to him. Their job is to make their clients comfortable and he was. My mother on the other hand had other problems and wasn't in pain but needed calming for her own good and well being. They were very understanding about my hesitancy and explained thoroughly what each med would be for and would do. Never did I ever feel pressured to give my parents anything that I felt they shouldn't have. They were always kind, considerate and kept my dad and mom at the top of their priority. Thank goodness they were there for us. I don't know what we would have done without them answering all our questions. Thank you Journey Care...you certainly help through a person's emotional journey.

childcaregiver

April 23, 2017

They get visually annoyed & uptight when you choose to go palliative & transition to hospice.They push really hard for hospice right off the bat, even though you made it really clear you understand palliative & hospice services & chose to go this route for reasons not really having to be justified to them,they will try to sway you to go directly hospice,stepping out of bounds disrespectfully in trying.., glaring pushy-businessy feel to it more than any sort of compassion & understanding.

February 8, 2017

We had Journeycare for our Mom when she was at Rosewood Care Center in Elgin, IL. The level of care provided by JourneyCare was fantastic! We loved Mom's Nurses, CNA, Social Worker & the Chaplain. They were there when we needed them, and always willing to make a phone call to answer any concerns we had. Laura and LaShaye were FANTASTIC! Mom LOVED them too! Definitely recommend. Honest caring, loving people.

Kelly Chops

December 1, 2016

Our family is so very grateful that my dad was able to be in this beautiful, warm facility for his last days. Each nurse and staff member was compassionate, caring, and gentle with my dad. My sister and mom and I felt that the staff listened to us and respected our wishes for my dad's last days. If I had to go through this myself I would want to be in this facility with these amazing caregivers. From start to finish the level of professionalism and caring was top notch. We could not have asked for better. I feel like they treated my dad as if he were their own dad. If you have a choice get your loved one here, we are so very grateful that we were able to be here at this location.

Jim's daughter

October 18, 2016

I came in from out of town when my step-mom come home from the hospital and into in-home hospice. JourneyCare (JC) came and helped us, especially my dad, understand that this is the beginning to the end, and gave an overview of what to expect and how to respond. They were there for us, but gave us the space needed to have family time and to deal with all the stress of it as family. JC checked in regularly, and were carefully monitoring the situation--giving new information and advice as needed. When they came to the house, the nurse would "read the room" to know where everyones' thoughts were, and compassionately listened and gave us the "hard to hear" things nobody is ever prepared to receive. For a week we were able to give mom the dignity she deserved, and the last critical days we were able to keep her comfortable until the end. JC was available for bathing, phone calls and medication delivery 24 hours a day, and I felt they managed mom and the family beautifully. Always there for us, and were kind, compassionate--and always honest.

NopeNopeNope

October 13, 2016

Half of the nurses actually cared about what little life my grandpa had left. He was in the facility for not even 48 hours and the entire time he was completly out of it because of all the morphine they gave him.... WHEN HE WASN'T IN PAIN. Seems to me like their biggest concern is strictly business: Get the bodies in and out as fast as possible. Stay clear, You're welcome.

August 25, 2016

My mother passed away this past June. The support and care that she and my family received from Journey Care was fantastic. The facility is beautiful and the nurses were great

May 30, 2016

It was a mistake choosing this provider. They were rude, incompassionate, uncaring, disorganized and unskilled from the very second they entered my home. They made me pre-fill out a death certificate the evening we arrived home from the hospital. The admission nurse said she didn't want to come back so do it now. The nurses they sent (when we could get them to send somebody) were incompetent and made us feel as though we were bothering them.One commented "Why don't you just just call us after she dies?".... My mom was in extreme distress in her last days and they did nothing to help alleviate that. The first day arriving home from the hospital they did "crisis control" and had someone in my home keeping us up for 24 hours a day. This was for the first 4 days when my mom was NOT in crisis, did not need help, and just wanted to be alone with family. Journeycare would not respect that. After they could no longer bill for crisis control they left and it was almost impossible to get someone back. Especially when she really needed the help. She lived 8 days on hospice. Their answer to every request for help was just to "give her more morphine, shell breath better. yeah give her some xanax too". It was obvious from the very start they were performing euthanasia as economically as possible to them. It was also clear they were more concerned with the financial gain to them than care for my mom. Overall a horrible experience with this company and we would have had better care if we stayed in the medicare system.

Ilene Diamond

May 14, 2016

The worst possible agency you would ever have the misfortune of using!! Nurses....rude, lack compassion, not friendly! Their administration....doesn't care! Stay away! Company is no longer a hospice/palliative care service, it's a conglomeration and does not care at all who they hire, nor do they care about their clients/patients!!

March 7, 2016

I can NOT recommend Journeycare for palliative care. I am the patient and after two attempts to obtain services I was denied a phone call or a letter stating why I was denied. The intake nurses did not properly communicate to me nor home health a true picture of eligibility. Health information was mishandled. Everyone you talk to has a different answer. Dealing with them made me more ill. Use someone else.

July 21, 2015

My husband went straight from Rush intensive care to Horizon Hospice in patient care located on the Rush Campus. EVERYONE was very helpful and very nice. 9 months after my husband's death, I called because I knew I needed grief counseling, and they got me in within 2 days. I continue to go to counseling for free but will definitely give a donation.

Helen's daughter Jean

March 28, 2015

My mother recently spent 6 very long and emotional days in the care of JourneyCare and they could not have been more supportive to our family. There were so many people that asked "what can we do do help you?". The volunteers would come in and just sit and listen when we needed to speak. There were snacks and just the little things that helped us with this period in our lives. When my mother passed, they showed great respect and would highly recommend them to anyone.

March 10, 2015

I would like to thank Journey Care for their wonderful care of my mom. They treated mom as if she were their own family member. Loving, gentle, thoughtful. They not only took care of her medications and other physical needs, they asked about music preferences and often just sat holding her hand and playing classical music she loved. They are a wonderful service made up of competent staff. They also made sure to call or see us about updates or check with us to ask if we had any concerns or observations. Always pleasant, always caring both for mom and her family. Thank you again for being there.

helpthesick

February 16, 2015

I would highly recommend NOT USING this organization. There are awful, just cannot get it together and just make excuse upon excuse! When the one you love is suffering and you are looking for help the last thing you need is someone who is cold and rude. DO NOT USE . . .

February 12, 2015

Contacting Journey was a call I had hoped I never had to make but in the end I am glad I did. My Mom was told she had less than 5 months and didn't last 2 weeks. When Journey came in they helped our family and my Mom leave with dignity. Loree and Jennifer were absolutely the most compassionate special people I have ever met. They took very good care of my Mom and they helped me and my family with the transition. I must also mention Lino who came after my Moms passing to help us prepare for her departure from her home... he was an angel. Thank you Journey you are special people who deserve to be recognized!! May God Bless you and families

December 21, 2014

When Mom was discharged after 3 hospitalizations in 4 weeks their solution was rehab. Absolutely ridiculous. There was no rehabbing for her diagnosis. We decided to bring her home with 24/7 care. JourneyCare provided everything she/we needed. From nurses, social worker, massage therapy, spiritual care and helped the family prepare for what we knew was coming. We were able to provide everything she needed in her home, which is exactly what she wanted. She passed peaceful in her own home with her family around her. JourneyCare helped us provide her with services as to make this as painless as possible. We were prepared for every possibility. It was an incredible experience to be with her as she left. They are truly experts in this area and would recommend them to anyone who is facing this challenge.

Caring93044450

December 3, 2014

I was utterly impressed with Midwest Palliative & Hospice CareCenter. My husband stayed there slightly less than 24 hours. At every level and encounter, I found human beings who were personable, respectful, and silent. There is a silent respect. The hospice experience is a whole lot cheaper than a nursing home. I have nothing but praise to say about the ambience, the environment, the beauty of the place, and the art on the walls. It is all very sensitively done. The building itself sits along a marsh which is the northernmost section of the Chicago River. They had a place where families could lounge where there was always coffee. They even had a little room where children could come in and read books. It is like a meditation center or a church atmosphere. There was a sense and aura of respect both in the architecture of the place, the inside, and the outside. There was only one entryway to the place. I had a remarkable experience.

July 9, 2014

I was very pleased with the care that my Dad received in his last 3 days at the facility and with the nursing care he received at home. The staff could not have been better and I know that my Dad's last days on earth were comfortable and peaceful. I highly recommend Journey Care.

May 12, 2014

JourneyCare was very caring, and they made it much, much easier for my father-in-law and the family. I don't think we probably would have found any place any better. He was only there for a few days. They made it very comfortable for him. The staff was wonderful. It is a place that if my mother-in-law, in the future, needs anything, that's probably where we will go with her.

February 5, 2014

Everyone was compassionate and extremely helpful before and after my grandmother's passing. This is why I recommend hospice to all who need this invaluable service. They are willing to help everyone as much or as little is humanly possible and accepted.

TinaKazlauska

January 13, 2014

i was absolutely amazed by the level of care and compassion we received. They were so helpful and caring I could not have gotten through this with out them. They are angels on earth...my uncle did not suffer one moment once we brought in journey care. Our nurses were the best of the the best.

November 20, 2013

Hospice means -You the family do the work while Hospice provides care via phone. From the moment we signed with Journeycare we had issue after issue from the inpatient facility to lack of care at home especially in the last hours when we needed someone most. If anyone were to ask me about Journeycare , I would tell them to find family and friends to help them because that is what Journeycare feels you need most. Ever feel alone? I did . Thanks for the poor care my family member received . My rating isn't even 1 star but I had to give one star to submit ..really?

May 28, 2013

I had an appointment/interview with this facility for my husband and they never showed up at my home nor did they call to cancel or reschedule my husband's appointment/interview. I received a call from this facility several days after his scheduled appointment. I am looking for quality Hospice Care for my husband and if they can't keep the initial appointment/interview how can I trust this facility to care for my husband when he needs the most care he's ever needed in his life.

Wife of patient

May 20, 2013

The team who provided care for my husband and support for myself and my family was wonderful. They returned calls promptly, provided meds and supplies as needed and provided the level of care that allowed us to keep him at home. I could not have done it without them.

June 21, 2012

Midwest Care Center offers a wide variety of services, as a client I have had tremendous help and support with grief counseling and palliative care for my elderly mother. The doctors, nurses, councelors, and social workers are very professional. I feel they have a personal touch that helps finds solutions to the everyday problems that have dealt with medicines and behavior.

November 30, 2011

HORRIBLE! From the first day of having them, it was one problem after another. I made complaint after complaint. I feel sorry for the people that can't fight back or have no knowledge of the medical aspects. DO NOT recommend at all. No one even bothered to contact us after the passing of our dear family member. Very sad!

November 20, 2011

Patient was my wife Diane and we worked with the hospice folks for about six weeks in our home. The staff was careing and responsive to our needs during a difficult time for our family. I would recommend the staff and agency at any time.

July 29, 2011

When my aunt's health began to deteriorate, we contracted with Midwest Pallative & Hospice Services. Since she was already in a nursing facility, they didn't need to provide they same assistance as someone at home. They provided medicine and comfort care during her final days and someone was in constant touch with me, giving me updates. When my uncles health deteriorated, I call Midwest Pallative & Hospice Services again. They provided much of the same assistance, he was also in a nursing home. However, this time I received much less communication from staff and volunteers. The nusing staff his facility provided me with more information on their visits than they did.l

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Services and Amenities of JourneyCare in Barrington, Illinois

About journeycare in barrington, illinois.

JourneyCare is the largest nonprofit provider of palliative, supportive and end-of-life care in Illinois, serving nearly 3,000 patients and families each day across 10 counties in the Chicago area and northern Illinois. Care and support are provided to patients of all ages, helping them to live fully, with dignity and without pain, on their own terms. JourneyCare is the combined organization of Horizon Hospice & Palliative Care, JourneyCare and Midwest Palliative & Hospice CareCenter.

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Addus Acquires JourneyCare in $85 Million Deal

Addus HomeCare (NASDAQ: ADUS) has purchased JourneyCare Inc., for an anticipated sale price of $85 million. JourneyCare, a nonprofit, is one of the largest hospice providers in Illinois, serving 750 patients daily in 13 counties.

Addus had indicated in 2021 earnings calls that the company would lean its M&A activity towards personal care and home health during 2022, but would continue to consider hospice transactions as they work to build density in markets where they have a home health or personal care presence. Among these markets is the Chicago metropolitan area, where JourneyCare is headquartered. In October, Addus completed its acquisition of Summit Home Health, also near Chicago.

“Acquisitions are an important part of our growth strategy, and we are pleased to start 2022 on a strong note,” Addus CEO Dirk Allison said. “Our development team continues to do an outstanding job of identifying strategic acquisitions and our strong capital structure supports our ability to continue this successful track record. We look forward to the growth opportunities ahead for Addus in 2022.”

Addus provides hospice, home health and personal care services to nearly 44,000 patients through 215 locations in 25 states. The company’s net service revenues rose 11.7% to $216.7 million in the third quarter of 2021, up from $194.0 million for the prior year’s period.

Addus will finance the deal, expected to close on Feb. 1, through a mix of cash on hand and the company’s revolving credit facility. Addus last summer secured a $600 million revolving line of credit with Capital One Financial Corp. (NYSE: COF) as the lead arranger and administrative agent. The company indicated that it intends to apply the credit to pursue further acquisitions.

The company has been active in the M&A market in recent years, completing seven personal care acquisitions and four home health and hospice since 2019. Most recently, Addus acquired Armada Hospice of New Mexico and Armada Hospice of Santa Fe for $29 million. The transaction also included the affiliated Armada Skilled Home Health of New Mexico.

Hospice utilization in JourneyCare’s home state of Illinois market reached 50.3% among Medicare decedents during 2018, which is in line with the national average, according to the National Hospice & Palliative Care Organization. Utah led the nation with 60.5%.

“We very carefully selected Addus to carry forward the JourneyCare clinical operations, and we believe this combination will benefit our employees, patients and everyone associated with JourneyCare,” Kimberly Hobson, president and CEO of JourneyCare, said. “We share the same commitment to providing quality, end of life care, and we look forward to working together to close this important transaction.”

Companies featured in this article:

Addus Homecare , Armada Hospice of New Mexico , Armada Skilled Home Health of New Mexico , Capital One Finance Corp. , JourneyCare , Summit Home Health

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Jim Parker is a subculture of one. Swashbuckling feats of high adventure bring a joyful tear to his salty eye. A Chicago-based journalist who has covered health care and public policy since 2000, his personal interests include fire performance, the culinary arts, literature, and general geekery.

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A Cancer Patient Journey: Complete Review During Acute Treatment Phase

Saima siddiqui.

Department of Family and Community Medicine, University of Texas Health Science Center at San Antonio, San Antonio, Texas.

Purpose: Cancer is a chronic illness with acute episodes lasting for years. Most cancer patients have coexisting comorbidities, which affect cancer treatment outcomes and make a shared care model for chronic diseases essential. There is a considerable gap between the achievable and delivered quality of care for cancer patients.

Methods: We used a case study approach to examine the complexity of cancer management, from the perspective of one person's case as interpreted by the care team. It allowed the complexity of cancer management to retain its holistic and meaningful characteristics. We interviewed the patient, caregiver, primary care physician (PCP), and oncologist. Interviews were audio recorded and analyzed with ATLASti, qualitative statistical software. Participants also completed a basic demographic survey. Common themes were identified, analyzed, and discussed.

Results: Main themes were lack of longitudinal relationship with PCP, communication barriers, and ambiguous health care provider roles. Communication barriers can be associated with the other two main themes.

Conclusion: Our results showed that shared care for cancer management is lacking during the acute cancer treatment phase. Communication barriers between the PCP and oncologist along with lack of continuity of care and unclear role of the PCP are major contributors for fragmented cancer care in U.S. health care system.

Introduction

Cancer is a leading cause of morbidity and mortality worldwide. In 2013, there were ∼1,660,290 new cancer cases and 580,350 cancer deaths in the United States. 1 A diagnosis of cancer is still very stressful and frightening for the majority of patients and families 2–4 although the number of patients living with cancer has increased threefold since 1971. 5 According to the Center for Disease Control and Prevention (CDC), cancer is classified as a chronic disease and described as of long duration and generally slow progression.

Studies have shown that cancer patients receive fragmented care especially during the acute treatment phase 6–9 stemming from system problems such as lack of health insurance, communication problems between health care team members, 7 , 10 and lack of role clarity among team members 11–14 The National Cancer Policy Board has concluded that for many Americans with cancer, there is a wide gulf between what could be construed as the “ideal and the reality of their experience with cancer care.” 15 There is not just a “gap, but a chasm.” 16

The purpose of this study was to gather a qualitative description of collaborative care from viewpoints of cancer patient (Pt), caregiver, primary care physician (PCP), and oncologist to better understand cancer patient's journey in the health care system.

A case study approach was used because it allowed us to examine the complexity of cancer management from the perspective of one person's case as interpreted by multiple people, retaining its holistic and meaningful characteristics while being studied 17 answering how and why questions. 18 Interviews from four participants presented multiple perspectives of the same interested topic, therefore achieving data triangulation.

The study is guided by the chronic care model (CCM), a proactive approach to keep patient healthy through productive collaboration between community and health systems; therefore, the study generalizes to the theoretical propositions of the CCM and not the population. 19 CCM identifies six structural elements: the community, the health system, self-management support, delivery system design, decision support, and clinical information systems. The interview guide was developed based on these areas. Development of the interview guide was an iterative process in which the researchers developed and discussed questions, which contextualized the CCM within cancer management. Once questions were approved, they became part of the official interview guide (12 total questions), which was re-evaluated for consistency and changed if researchers felt that questions were being misinterpreted. Main questions included were as follows: Tell me the story of how you learned you had cancer? Who did you talk to about your cancer diagnosis? How do your PCP and oncologist work together to manage your cancer and general medical care? The researcher conducting the interviews was knowledgeable in social science research of chronic conditions. Her inexperience served as a strength because she was not able to create leading questions or force participants into expected outcomes.

The study utilized a purposeful sampling method. 20 , 21 PCP identified and referred the cancer patient to the study. The patient then identified her caregiver and oncologist.

Data collection consisted of about 1 h long semistructured interview. The approach of starting with the patient and then interviewing the caregiver and the clinicians helped to understand how the same events were viewed from different perspectives. Each interview was recorded and transcribed for analysis. All research activities were reviewed and approved by the University of Texas Health Science Center San Antonio Office of Institutional Review Board.

Our sample included interviews with one cancer patient, her caregiver, PCP, and oncologist. Specifics of sample demographics are in Tables 1 and ​ and2 2 ).

Demographics of Patient and Caregiver in Case Study

Demographics of Providers in Case Study

M, male; PCP, primary care physician.

The results identified a major breakdown in the delivery system design highlighted in the CCM. The three main themes, which are organized around the patients' experience through the health care system—from cancer diagnosis to treatment, are as follows:

  • (a) Lack of longitudinal relationship with PCP
  • (b) Communication barriers
  • (c) Ambiguous health care provider role.

(a) Lack of longitudinal relationship with PCP: This theme supports a known system problem in which people who are the sickest and need health insurance the most do not have it. This particular patient lost insurance, secondary to unemployment because of uncontrolled hypertension.

The patient ended up in the emergency room (ER) for severe chest pain and was diagnosed as having leukemia.

Pt: “At that time, I did not [have a PCP] … I was one of those persons that go from payday to payday and I could not afford health insurance…Here I am very sick, quitting because I am very sick…So when I went into ER, I did not have a doctor…”

The first PCP visit was 4 months after her leukemia diagnosis and after receiving three cycles of chemotherapy.

Pt: “After my fourth visit to the [cancer treatment center] they told me that I need to call the [healthcare system] and I needed to get a PCP…”

The patient was assigned a new PCP in a teaching facility with residents and faculty members divided into teams and different providers saw the patient every time. The lack of a longitudinal relationship with a PCP appeared normal to the patient; therefore, she began to rely heavily on the oncology team and ER for things that a PCP could manage.

Pt: “Usually I see a different [provider], it is like a set of doctors that all work together. So, I can't say it is one doctor…”

(b) Communication barriers: The communication barriers surrounding cancer treatment began between the patient, caregiver, and health care providers almost immediately. As the patient was diagnosed with cancer in the ER, she felt she was not able to get the answers for her questions,

Pt: “The whole time all I was thinking, I have cancer! What is Leukemia… am I going to die… I heard them talking between themselves that it might be Leukemia…[And] they didn't want to give me the exact diagnosis yet.”

Similarly, the caregiver was not included in any stage of cancer management. After a few months, the oncologist provided a video to share with family members.

Caregiver: “..a lot of questions I had, I just used my own resources… [the providers asked] if you have questions…and then they gave us some packets and pamphlets. I relied mostly on my mom for communication… My mom has a high school education, GED, and she doesn't understand lots of words.”

The teaching practice setting also prevented her from communicating with the health care team. The caregiver's impression was that due to patient's privacy, physicians were not supposed to communicate with her, and residents' learning will be interrupted by her questions.

Caregiver: “I always assume, it's a privacy thing… I just wish there was a means for me to communicate directly with them or staff or nurse. I feel like there's residents that come in as a group with the doctors and learn, so I feel like I didn't want to interrupt their learning with questions.”

Caregiver also identified lack of communication between the PCP and oncologist.

Caregiver: “I feel like there's a lack of communication between them. That's a prescription given to her by her cancer doctor. Then the PCP will say that's not working out for you, let's take them off so that makes me uncomfortable, just in the sense that I feel like you should ask [the oncologist] first… My mom's been bounced back and forth between vitamins and medications that she'll get prescribed by one doctor, and then another doctor will change their mind..”

There was no specific arrangement for cancer patients to contact PCP for early or urgent appointments. When the caregiver called to report a concern, appointment clerk asked her to go to the ER. At times, the ability to provide advice was contingent on the flow of clinic traffic, sometimes the patient and caregiver were able to contact the oncologist but got same advice.

Both the PCP and oncologist identified lack of communication as a barrier for patient management. The health care providers were not able to effectively communicate because of the distance between facilities, a physical difficulty, and relational issue.

Oncologist : “The physical issue of being based in a downtown [building] and having oncology services out at medical center [approximately 12 miles away]. You can't pop over at lunch for a meeting ever, I suppose..”

Time constraint was another factor. PCPs do not have time to serve on cancer boards and oncologists do not communicate with PCP by phone or with follow-up letters.

Oncologist: “No one's going to serve on a board if they're all in clinic full time, of course… Everyone's busy so the communication is lacking…because we in oncology have been very short staffed.”

Use of different electronic health record (EHR) systems break communication further.

PCP: “It is not possible for providers to look into each other notes and management plan. You've got the problem of the two computer systems that don't talk to each other, so they don't see what they are doing in [EHR] and we don't see what they are doing in their EHR, so that makes it very difficult just all around.”

No point of contact within the PCP and oncology clinic was assigned for communication about patients. The PCP was expected to communicate through the oncology on-call resident or the front desk person for any question or concern. It resulted in duplicate laboratory tests and confusion about patient's treatment and patient served as the main communicator between the PCP and oncologist. It also resulted in care delay.

PCP: “These are all unnecessary barriers in communication between the two offices and one of them is the fact that you can't just book the patient before the patient leaves… sometimes you think you are conveying information, sometimes they don't receive it.”

(c) Ambiguous health care provider role: The patient, caregiver, and health care providers agree that the PCP should be an essential part of the management team; however, all ambiguously understands the role. The PCP was viewed as important for the emotional support of the patient and family.

Pt: “She [the PCP] asked me if I ever got depressed. I told her no… She said, it is okay to say it if you are…I told her when I get in the shower I just breakdown crying sometimes for no reason. She says good, let it out. She says it is okay to feel that way. I would feel that way too.”

However, the PCP was not comfortable in managing specific chemotherapy-related side effects. The PCP felt that their strengths were in management of chronic diseases. The oncologist felt that they should be able to rely on the PCP for support of common disease management.

Oncologist: “..honestly my knowledge of ideal hypertension management has declined… even though I am an internist at heart… I quickly need primary care support to manage hypertension, as well as routine health maintenance of immunizations and recommended cancer screenings. We [the oncologist] make the diabetes worse, so we constantly want to work with primary care teams.”

The oncologist identified that the PCP should be seen as (Oncologist): “an educator or tie-breaker in terms of treatment decision making.”

This study reflects a typical journey of an underprivileged uninsured cancer patient through the American health care system. It is unique in that data were collected and interpreted from the patients' perspective but captures several perspectives on the experience. No other studies, focusing on the patient perspective from a case study methodology, were found in the current literature. The patient lost her health insurance due to uncontrolled hypertension resulting in the loss of employment. This resulted in a delay of cancer diagnosis as the patient kept on postponing and neglecting the symptoms as long as she could tolerate. Main barriers identified in our study were the same as identified in earlier studies. Similarities included a lack of longitudinal relationships with the PCP, communication issues between patient, caregiver, PCP, and oncologist, and a lack of role clarification for providers and patient. 14 , 22–25 New finding was the patient and caregiver's inability to communicate with PCP due to the teaching practice setting.

This study identifies the serious gaps and areas of improvement for cancer. Our findings confirm that the PCP is not an active member of patients' management team during chemotherapy. 25–27 The first PCP visit took place after the fourth chemotherapy visit, ∼3½ months into chemotherapy. Studies have shown that one in five Americans reported not getting or delaying medical care, and the percentage of uninsured patients 45–64 years of age increased from 13.1% to 15.6%. 28 , 29 In addition, the patient did not have access to a PCP after obtaining health care insurance due to the PCP's busy schedule and the absence of special arrangements for cancer patients, which resulted in patients using the ER. Previous studies have shown that there is an increased use of health care services by cancer patients when they are undergoing acute cancer treatment by chemotherapy and radiation as well as after treatment. 30 , 31 Ideally, there needs to be special provisions or the identification of a key contact person for cancer patients in PCP offices.

Lack of communication was the most prominent problem identified by the patient, caregiver, and physicians. The main communication failure was between the PCP and the oncology team, confirming similar findings identified in other studies. 32–36 The federal government has offered incentives for meaningful use of information technology as a key tool for improving care coordination, which resulted in an increased use of EHR by physicians and hospitals. 37 , 38 In our study, the use of different EHRs by the oncologist and the PCP office was problematic. The PCP could not access patient information from the oncology visit and there was no formal follow-up letter from oncology. Therefore, the PCP did not have any idea about chemotherapy regime or patient prognosis. Ideally, EHR should account for human factors both tolerating human limitations and augmenting human strengths, 39 and bridging the gap between different segments of patient care rather than collecting numbers and producing reports to fulfill government requirements.

Similarly, the patient and caregiver expressed frustration about the lack of communication because it placed a larger burden on the patient as main communicator between oncologist and PCP, which is not an acceptable practice.

Not knowing the point of contact in the PCP and oncology office was an additional reason for communication breakdown. Good care coordination for safe and appropriate management of chronic conditions such as cancer are essential, but the care coordination remains inadequate and a major cause of health care expenditure and mistakes. 40 , 41 Possible solutions include uniform access to EHRs, clear identification of the patient's PCP and oncologist, a point of contact in each office, and a structured follow-up letter from oncologist to PCP. 42 Further studies are needed to evaluate the efficacy of these measures.

Time constraint was an additional reason identified by the PCP and oncologist for the communication breakdown. There is no formal reimbursement for physician or staff time used for communication and coordination between providers or by insurance companies. 43 In addition, the shortage of PCPs and oncologists, and increased number of cancer patients makes care coordination more difficult. 44 A system-wide change is needed to address these issues and acknowledge that time reimbursement will produce real improvement in patient care and reduce health care cost. The patient and caregiver identified the teaching hospital setting as an inhibitory factor because they felt that asking questions and communicating with health care providers would interfere with learning, which is a new finding by this study. It requires that teaching physicians take extra steps to include the patient and care giver in their discussions and make them feel like part of the team by formally including the patient in discussions.

Lack of PCP role clarification was another barrier identified for effective collaboration. 45–47 The current norm accepts that PCPs will not be a part of the cancer patient health care team. The patient and caregiver expectations were that the PCP would serve as emotional support, manage chronic disease, and perform routine health maintenance such as cancer screening and immunizations. Studies have shown that PCPs can play an important role in the management of cancer patients' coexisting chronic conditions and common side effects of chemotherapy, treating acute conditions such as viral illnesses and helping patient to make informed decisions about management, and end-of-life issues. 48 The oncologist agreed that the PCP was an important part of the health care team, and the PCP was comfortable in fulfilling all these roles. Clear role assignment of health care team members will decrease the role confusion and potentially impact patients' unnecessary ER visits, reducing patient discomfort and health care cost.

Our study revealed many barriers for collaboration during the initial cancer treatment phase between the PCP and oncologist. Even though there is an abundance of resources and expertise available, the lack of collaboration and fragmented effort resulted in a wide gap between possible and actual care delivery for cancer patients.

Limitations

The major weaknesses of this study are that it was conducted in a teaching hospital setting and describes the experience of only one patient. However, the purpose of a case study was to examine the complexity of a phenomenon (cancer management) while it retains its holistic and meaningful characteristics. Major strength of this study is that it describes the complete experience, as it has been understood by an underserved and uninsured patient, caregiver, and patient health care team.

Implications

The barriers identified in this study should be used to devise interventions to be tested in large-scale prospective studies to fill gaps in present system of cancer patient care.

Acknowledgments

This study was funded by American Cancer Society. We thank Robert L. Ferrer, MD, and Sarah Gill, PhD, for helping at every stage of article development and supervising all aspects of this project.

Abbreviations Used

Author disclosure statement.

No competing financial interests exist.

Cite this article as: Siddiqui S, Cruz I (2019) A cancer patient journey: complete review during acute treatment phase, Health Equity 3:1, 403–408, DOI: 10.1089/heq.2019.0046.

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Grief Care Fellowship - Grief and loss group curriculum

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Journey In Grief Care

Grief Support Training - Journey in Grief Care

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Grief Support Training for Lay or Pastoral Care of Grief and Loss

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Description

The Journey in Grief Care course will give you the confidence and skill to work with those who have just lost their loved one. You will know what to say, how to act, and what to do whether as a lay person or for pastoral care for grief and loss . This grief support training is designed for the leader to teach in a group setting , or for the individual to take the course at home.

COURSE FEATURES

Grief Support Training - Journey in Grief Care

  • Bible-centered training
  • 36 Lessons in HD
  • Student notes
  • Heartwarming, heart-wrenching personal testimonies
  • Click here to read an overview of Journey In Grief Care
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  • Includes both DVDs and USB drives for your convenience.

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This is a certificate course

Associate grief mentor certification – level one.

Certificate presented upon completion of GCF 101–104

Introduction to Grief Care

Module One (40 minutes) Testimony – 12:40 Session 1 – Embarking on the Journey – 8:04 Session 2 – Personal Testimony: Joan Wyrtzen Bagg – 7:15 Session 3 – An Answer to an Important Question – 11:52

More Detail

Grief Mentors Are Called to a Unique Ministry

Module Two (64 minutes) Two Testimonies – 13:15 Session 1 – Recognizing Grief – 11:57 Session 2 – Defining Grief – 20:43 Session 3 – Griever’s Emotional Roller Coaster – 11:52

Grief Patterns

Module Three (55 minutes) Two Testimonies – 15:25 Session 1 – Practical Understanding of Normal Grieving Patterns – 11:23 Session 2 – Ministering As a Grief Mentor – 14:26 Session 3 – What Grievers Want You to Know – 15:21

Grief Recovering

Module Four (58 minutes) Three Testimonies – 24:03 Session 1 – Hindrances to Grief Recovery – 11:35 Session 2 – Rebuilding Lives: Growth Through Grief – 11:25 Session 3 – The Recovery Process – 10:21

Grief Mentor Certification – Level Two

Grief Support Training - Module 5: Grief Insights

Grief Insights

Module Five (59 minutes) Two Testimonies – 29:02 Session 1 – Death As a Personal Relief – 12:14 Session 2 – Saying Goodbye to Grief – 9:48 Session 3 – Understanding What Closure Is All About – 7:27

Complicated Grief Part 1

Session Six (54 minutes) Two Testimonies – 18:59 Session 1 – When and Why Grief Becomes Complicated – 7:41 Session 2 – Issues of Delayed Grief – 8:37 Session 3 – Chronic Grief – 18:45

Complicated Grief Part 2

Module Seven (65 minutes) Two Testimonies (25:59) Session 1 – Unresolved Grief and Bargaining Grief – 11:59 Session 2 – Exaggerated Grief and Toxic Grief – 11:11 Session 3 – Addictive Grief and Depressive Grief – 15:33

Death of Infants, Children, Still Born, SIDS

Module Eight (72 minutes) Two Testimonies – 22:28 Session 1 – Life Is Too Short – 20:35 Session 2 – Grieving the Future – 11:06 Session 3 – Ministering to Children – 18:03

Master Grief Mentor Certification – Level Three

Certificate presented upon completion of GCF 109–112

Death by Suicide, Homicide, Accidental

Module Nine (66 minutes) Two Testimonies – 28:30 Session 1 – What Happened and Why? – 15:30 Session 2 – Suicide’s “Quiet Walk” – 7:21 Session 3 – Picking Up Life and Moving On – 13:57

Challenging Family Dynamics

Module Ten (57 minutes) One Testimony – 14:19 Session 1 – Families Have Differences – 13:39 Session 2 – Families Have Disagreements – 19:18 Session 3 – Families Can Reconcile – 8:12

Grieving Through the Holidays

Module Eleven (36 minutes) No Testimonies Session 1 – “Jangling” Sounds of the Holiday Season – 19:52 Session 2 – The New Challenge – 6:27 Session 3 – Developing New Traditions – 8:57

How to Work with the Funeral Director

Module Twelve (65 minutes) One Testimony – 21:53 Session 1 – Introduction to the Funeral Director – 13:26 Session 2 – Funeral Planning – 19:57 Session 3 – Burial Planning – 9:48

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DAV National Commander Nancy Espinosa shares mental health care journey

This story is part of DAV’s 2024 report, Women Veterans: The Journey to Mental Wellness. The report is a comprehensive assessment of the unique factors contributing to the staggering rates of suicide among women veterans and how the system charged with their mental health care can and must do better. Learn more at womenveterans.org.   

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Her monthslong recovery from surgery was quickly followed by the devastating loss of her sister, Margaret.

“It was so unexpected,” Espinosa said. “I still miss her, even though it’s been more than 30 years.”

Soon after, Espinosa’s young stepdaughter unexpectedly died. Espinosa found herself in a deep depression and decided, with the support of her family, to take a hardship discharge from the Army. To continue her military career the only way she could, she transitioned into the New Mexico National Guard.

Espinosa turned to the Department of Veterans Affairs for health care but felt her local medical center at the time was ill-equipped to address women’s health care.

“There was very little support for women veterans, and especially female issues. They didn’t know how to deal with that,” she said, adding that she went outside of the VA for gender-specific care.

“As far as mental health, I didn’t even realize that was an option with the VA,” she said. “I mean, if they couldn’t handle my medical care, I didn’t feel like they were prepared to help treat my depression.”

So she went outside the VA for mental health care, too.

Espinosa said the VA has made notable strides in understanding and caring for women veterans since then. The VA worked hard to establish a comprehensive health and gender-specific care model for women. In 2010, it established the Women’s Health Research Network, making the VA a true knowledge leader in women veterans health, and continues to add specialized care services for women, including the Reproductive Mental Health Consultation Program.

“I do realize that women veterans are some of the least likely to get VA services, and I was in that same boat when I got out of the military,” Espinosa said, adding that her VA care has significantly improved over the years.

“We just need to educate women veterans that those services are there and that DAV and their fellow veterans are on their side.”

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Ge healthcare and biofourmis collaborate to extend patient monitoring outside the hospital with virtual care-at-home solutions.

CHICAGO and BOSTON - Feb 26, 2024

Collaboration supports the patient journey across the care continuum and eases transitions and care from the hospital to home

GE HealthCare (Nasdaq: GEHC) and Biofourmis have announced a strategic collaboration aimed at enhancing continuity of care by enabling safe, effective, and accessible care in the home to support the patient journey beyond the hospital setting. The collaboration leverages the combined expertise of two market leaders to scale and deliver innovative care-at-home solutions.

Hospital systems are experiencing increased cost of care due to workforce shortages, constrained bed capacity and increasing readmission rates. [i] , [ii]  Care-at-home programs, which typically include a virtual  component, have proven to be effective in decreasing the length of stay and readmission rates which can result in the overall cost of care being reduced. [iii] , [iv] Additionally, care-at-home programs can also support patient recovery and safety, with a potential reduction in fall risk and hospital acquired infections. [v] Patients using remote solutions in their homes are three times more likely to be satisfied with the overall care experience. [vi]

The goal of the GE HealthCare-Biofourmis collaboration is to enable more patients to go home earlier, and offer an alternative to facility-based care with the comfort and peace of mind that they are receiving high quality care at home with the intent of driving healthy behaviors in patients by managing them remotely. Moreover, insights from Biofourmis’ FDA-cleared, AI-guided algorithms can help care teams deliver efficient, personalized care at home.

“Biofourmis’ demonstrated success with care-at-home solutions will extend GE HealthCare’s current inpatient monitoring portfolio to support patient care from the hospital to home,” said Ashutosh Banerjee, GE HealthCare. “Combining our companies’ demonstrated capabilities will help revolutionize the way we approach the patient care journey as well as help address current challenges faced by health systems including hospital capacity issues and clinical staffing shortages.”

Biofourmis offers care-at-home solutions to deliver and enable care both virtually and in person using its digital platform, with FDA-cleared AI-guided algorithms, clinical-grade wearable devices, in-home services orchestration technology, and nursing services. The solutions provide numerous dynamic care pathways with questionnaire-branching logic to provide enhanced clinical context for care teams.

GE HealthCare’s FlexAcuity™ monitoring solutions in combination with GE HealthCare’s virtual care solutions like Mural ICU, Command Center and Digital CMU adapt to rapidly changing patient needs in the hospital and are built on a legacy of innovation. By offering Biofourmis’ virtual care-at-home solutions to customers, GE HealthCare can extend the care continuum beyond the hospital, and care teams can have a longitudinal patient view beyond the hospital setting.

Ross Armstrong, General Manager of Biofourmis Care, said: “Our collaboration will enable health systems and hospitals to leverage the power of technology and data in order to shape patient-focused solutions across the care continuum, no matter where the site of care is.”

GE HealthCare will begin distributing Biofourmis solutions to customers in the United States starting Q1 2024.

[i] Fleron, A., Krishna, A., & Singhal, S. (2022, September 19). The gathering storm: The transformative impact of inflation on the healthcare sector. McKinsey & Company. https://www.mckinsey.com/industries/healthcare/our-insights/the-gathering-storm-the-transformative-impact-of-inflation-on-the-healthcare-sector

[ii] Massive Growth in Expenses and Rising Inflation Fuel Continued Financial Challenges for America’s Hospitals and Health Systems . American Hospital Association. (2022, April). https://www.aha.org/system/files/media/file/2022/04/2022-Hospital-Expenses-Increase-Report-Final-Final.pdf

[iii] Levine DM, Ouchi K, Blanchfield B, Saenz A, Burke K, Paz M, Diamond K, Pu CT, Schnipper JL. Hospital-Level Care at Home for Acutely Ill Adults: A Randomized Controlled Trial. Ann Intern Med . 2020 Jan 21;172(2):77-85. doi: 10.7326/M19-0600. Epub 2019 Dec 17. PMID: 31842232.

[iv] Leff B, Burton L, Mader SL, Naughton B, Burl J, Inouye SK, Greenough WB 3rd, Guido S, Langston C, Frick KD, Steinwachs D, Burton JR. Hospital at home: feasibility and outcomes of a program to provide hospital-level care at home for acutely ill older patients. Ann Intern Med . 2005 Dec 6;143(11):798-808. doi: 10.7326/0003-4819-143-11-200512060-00008. PMID: 16330791.

[v] Telehealth: Helping hospitals deliver cost-effective care. American Hospital Association. (2016, April 22). https://www.aha.org/system/files/content/16/16telehealthissuebrief.pdf

[vi] Leff B, Burton L, Mader S, Naughton B, Burl J, Clark R, Greenough WB 3rd, Guido S, Steinwachs D, Burton JR. Satisfaction with hospital at home care. J Am Geriatr Soc . 2006 Sep;54(9):1355-63. doi: 10.1111/j.1532-5415.2006.00855.x. PMID: 16970642.

About GE HealthCare Technologies Inc.

GE HealthCare is a leading global medical technology, pharmaceutical diagnostics, and digital solutions innovator, dedicated to providing integrated solutions, services, and data analytics to make hospitals more efficient, clinicians more effective, therapies more precise, and patients healthier and happier. Serving patients and providers for more than 100 years, GE HealthCare is advancing personalized, connected, and compassionate care, while simplifying the patient’s journey across the care pathway. Together our Imaging, Ultrasound, Patient Care Solutions, and Pharmaceutical Diagnostics businesses help improve patient care from diagnosis, to therapy, to monitoring. We are a $19.6 billion business with 51,000 colleagues working to create a world where healthcare has no limits.

Follow us on  LinkedIn ,  X (formerly Twitter) ,  and  Insights  for the latest news, or visit our website  https://www.gehealthcare.com/  for more information.

About Biofourmis 

Biofourmis delivers technology-enabled solutions that bring the right care to any person anywhere. Biofourmis’s innovative solutions provide people everywhere with connected access to hospital-level services, virtual provider networks for remote care, in-home services, and life-changing clinical trials—all without leaving their homes. The company’s FDA-cleared AI-enabled analytics collect and analyze patient data in real time and identify shifts that can assist in supporting proactive interventions. Trusted by leading health systems, payers, biopharma companies and patients alike, Biofourmis's connected platform improves patient outcomes, prevents hospital readmissions, aims to accelerate drug development, and closes critical gaps in care—ultimately making science smarter, healthcare simpler, and patients healthier. Biofourmis is a global technology company enabling care delivery, with headquarters in Boston and offices in Singapore and India. For more information, visit biofourmis.com and follow Biofourmis on LinkedIn .

GE HealthCare Media Contact:

Jennifer Purdue

M + 267 593 9735

[email protected]

Biofourmis Media Contact:

Tara Stultz

Amendola Communications

M +440 225 9595

[email protected]

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Latest Press Releases

Ge healthcare and biofourmis collaborate to extend patient monitoring outside the hospital with virtual care-at-home solutions ....

February 26, 2024

Serving patients and communities through comprehensive care solutions: OSF HealthCare, Pointcore, Inc. and GE HealthCare enter strategic care alliance. ...

February 19, 2024

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Cooperative Extension: 4-H

Know someone who is interested in becoming a 4-h volunteer tell them about start your 4-h volunteer journey.

University of Maine Cooperative Extension will offer a two-part online informational session for adults interested in becoming Maine 4-H volunteers on March 19 & 26 from 6 – 7 p.m. “Start Your 4-H Volunteer Journey” will provide participants with information about the UMaine Extension 4-H youth development program through four short e-Learning modules. Attendees will also participate in an experimental learning activity, learn about the key aspects of positive youth development, and be introduced to ages and stages of youth. The two one-hour virtual sessions will wrap up with an outline of next steps and an introduction to a county staff contact to help with the application process if desired.

Registration is required. The sessions are free. To register, visit our  website .

For more information or to request a reasonable accommodation, contact Jennifer Lobley,  [email protected] , 207.255.3345.

RecureMe: Patient Wellness 17+

Your path to your wellness, recureme technology private limited, designed for iphone, iphone screenshots, description.

Discover RecureMe Patient, your personalized mobile app for connecting with top physiotherapists and managing your physiotherapy journey. This app is designed to help you find the best local physiotherapy care, track your progress, and engage in effective workouts tailored to your needs. Key Features: Find Nearby Physiotherapists: Quickly locate and book appointments with highly-rated physiotherapists in your area. Our app ensures you get the best physiotherapy treatment nearby. Select Based on Ratings: Choose your physiotherapist with confidence, using ratings and reviews to guide your decision. Detailed Workout Plans with Videos: Receive customized workout plans from your physiotherapist, complete with instructional videos and notes. This feature helps you understand and perform each exercise correctly. Track Your Activities: Monitor your workout progress and activity levels within the app. Stay motivated and informed about your physiotherapy journey. Synchronized Treatment Tracking: Your physiotherapist can also access your activity data, ensuring a coordinated approach to your treatment plan. Flag and Notify Difficult Exercises: Easily mark challenging exercises and communicate with your physiotherapist for adjustments. Access Top Physiotherapy Blogs: Enhance your knowledge and inspiration by reading leading physiotherapy blogs, all available in the app. RecureMe Patient is your gateway to a healthier, more active life, providing you with the tools and resources you need for a successful physiotherapy experience. Download RecureMe Patient now and take the first step towards enhanced physical well-being!

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The developer, Recureme Technology Private Limited , indicated that the app’s privacy practices may include handling of data as described below. For more information, see the developer’s privacy policy .

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Hollywood Reporter

‘Where Is Wendy Williams?' Doc Explains TV Host's Guardianship as Family Questions Her Care

The final episode of the four-part Lifetime documentary Where Is Wendy Williams ? introduces a new character by way of former daytime talk show host Wendy Williams ' sister, Wanda, who, though initially hesitant, agreed to be a part of the film one year after production began.

"It has been a long journey in terms of the experience for our family and for Wendy," Wanda says in the documentary. "I hope to come out of this letting people see the love that we have as a family together for each other as well as the love we have for Wendy, and to understand the journey we've been through that has not always been perfect. Everyone wanted the same thing, which is to see Wendy healthy and happy."

Though Wanda doesn't appear onscreen until part four of the documentary series, Wendy Williams, who is an executive producer of the project, makes mention of her sister in episode one , which aired Feb. 24. When asked about rumors that she's still battling substance abuse issues, Williams tells producers, "I love vodka and the problem is with Wanda; she's my sister. I love Wanda, but she hates that I love alcohol."

Wanda helps ground her family's plight in attempting to take back ownership of Williams' care from her court-appointed guardian, who has now been identified as Sabrina Morrissey following a Thursday legal complaint seeking to block the series, which was vacated, allowing the series to air as planned. This also comes amid the documentary's revelation of a cognitive disorder that differs from the diagnosis of primary progressive aphasia and frontotemporal dementia that was announced by Williams' team in a press release two days prior to the documentary's release. The family's concerns about who has access to Williams and the intentions of those individuals also come to a head, as the limited personal rights of the guardianship under which Williams has been placed play out onscreen. (Williams also released a rare statement Friday via her rep.)

Here are the biggest questions raised from parts three and four of Where Is Wendy Williams?

Williams' family says she's been diagnosed with alcohol-induced dementia

In part four of the documentary, Williams returns to Miami to visit with her family nearly a year after her last trip in the fall of 2021. When a producer asks Williams' son, Kevin Hunter Jr., why his mom came to stay with them during her previous visit, he reveals that doctors told him she was suffering from alcohol-induced dementia. "From taking her to appointments and things like that, I was able to really learn more about things going on with my mother internally," he says. "They basically said that because she was drinking so much it was starting to affect her headspace and her brain."

Williams' niece, TV anchor Alex Finnie, shares that she found out about her aunt's diagnosis through her family one year later, in the fall of 2022. "All I know is that it was dementia," she explains in the doc. "You look back at little things and it's a slow roll, right? It's little things like, ‘When's your birthday again?' ‘What's his name again?' But after seeing my aunt and really spending time with her in the state where she's in right now, I quickly realized that things were just not normal. It's heartbreaking."

Reiterating the factors that contributed to Williams' increased alcohol use, as discussed in parts one and two of the documentary, Alex states, "When it's come to my aunt's dementia, there are three things that didn't help her: divorce, the pandemic and then losing my grandmother."

Williams can't make any decisions without her guardian's consent

Though Williams' guardianship has been positioned as solely financial , Morrissey legally has control over all aspects of the media personality's life, including if and when she can travel, where she lives, and with whom she has contact and when.

Near the end of part four, Williams' manager Will Shelby, one of few people who has access to her, tells producers she's expressed the desire to one day move to Miami, where her family resides. Asked by producers whether that relocation would need to be approved by the court, Shelby replies, "Everything with Wendy is a court decision, everything. She's not making any decisions on her own. Everything has to be decided by the court."

Audiences were given a glimpse into how much control Williams' guardian has over her comings and goings in part three of the documentary when her publicist, Shawn Zanotti, flies Williams to Los Angeles in March of 2023 to meet with NBC about returning to television without Shelby or Morrissey's knowledge. NBC declined to comment on the meeting to producers, but Shelby expressed his discontent both with Williams and Zanotti, before telling producers, "I don't even know how the guardianship feels about this."

Bleeping out Morrissey's name - as her identity had remained private in court-sealed documents at the time of production - he goes on to say, "[Blank] texted me asking me, ‘Is Wendy in L.A.?' I ignored her. I don't even know what to tell her ‘cuz now she's gonna look at me like, ‘How did you let Wendy go up to L.A.?' So now, she's not going to trust me. They don't understand the position they put me in. I'm just pissed."

Even before Williams was officially placed under a court-ordered guardianship, her rights and those of her family started to be stripped from them, Hunter says in the doc.

"My power of attorney was taken away from me when the court proceeding started," he explains. "And then they tried to say that while the court case was going on that if we wanted to bring her to Florida, it'd be considered kidnapping."

Williams' family thinks she's being taken advantage of

Zanotti was already seen as a questionable figure by Williams' family, particularly by her niece Finnie, who greets her coldly when she finds Zanotti at home with her aunt in New York when she comes to visit. Soon after, Finnie excuses herself before telling producers she doesn't want to film with Williams' publicist.

"This is my aunt, and I don't need her [Zanotti] in the room. I'm not doing that. I don't even know who this person is," Alex says before bursting into tears. "This is all very jarring. Like, what is going on?"

Alex decides to ask her aunt just that after Zanotti excuses herself when her attempts to comfort Williams' niece aren't received. Finnie is heard muttering under her breath, "I don't need your fake, using behind in the middle of my relationship," before Zanotti leaves.

Finnie then turns her attention to her aunt, whom she tells bluntly, "I'm just trying to understand. Like, what you pay her and she's your friend?" When Williams answers in the affirmative, Alex attempts to reason with her.

"I'll be honest with you. It's no secret that there have been random people around you getting money, getting paid, whatever the case may be. I'm just trying to figure out your friend that you're saying is your friend that you're also paying. It's giving a little desperate energy. You are an A-list celebrity. You are bigger than this. You are better than this. You are smarter than this. You are stronger than this. The Aunt Wendy that I know, that has instilled in me how to navigate this crazy business that we're in, this isn't it," Finnie says before adding, "Listen to the people in your life that are not taking a dime."

Williams' family has always wanted to be her guardian

In part four, Williams' family makes it clear that they've always wanted to be in charge of her care and had expectations that they would in fact be.

"The decision to bring her to Florida was between us and the show," Williams' nephew Travis Finnie says of Williams' visit to Miami in 2021 in the doc. "It was a group decision. The decision to keep her in Florida, extended, was a family decision and that's where the show and the family started to disagree and the financial adviser. They saw that she was down here for too long, and our priority wasn't just to dust her up and then put her back onstage, it was to actually focus on long-term recovery, and that's when they started fighting this."

Still, after Williams was ordered back to New York in April of 2022 for court proceedings regarding potential guardianship, her family believed she would remain in their care.

"When the whole process started, all members of this family were contacted about Wendy and what we needed for her," Wanda explains. "My feeling as her sister was that Wendy needs to have somebody with her 24 hours a day for the next few months. I was asked, would I consider being a guardian? And I said, ‘I don't know what being a guardian involves.' I was told that it involved taking some kind of class, and I said, ‘Yeah I'll do it.' I said, ‘Whatever I gotta do, I'll be focused on Wendy's health.' And then all of a sudden, the wall came down and there was nothing."

Williams' family maintains that when she returned to New York, things got progressively worse, with her nephew saying that once when he flew to New York to visit, Williams would just "sit in bed all day with bottles of vodka."

"I think that the guardianship system is broken," Wanda later says in the episode. "If this is how it works, then it's broken."

Her remarks underscore similar feelings Hunter shares in part three of the documentary.

"I feel like the guardian has not done a good job of protecting my mom, and I feel like Will is a jeweler at the end of the day," he says of her manager, Shelby. "I think he's trying to do his best. At the same time, dealing with my mom is a very intense job to have that a lot of people can't handle."

Asked by producers what his concerns are if something drastic doesn't change, Hunter admits, "I'm afraid that she could die."

When given a final chance to set the record straight about the court's implication that her family wasn't capable of taking care of Williams, Wanda tells producers, "I don't know what ‘not capable' means. You've had people in the family from the beginning saying that we would take responsibility with regard to guardianship and personal needs to ensure that she was healthy and taken care of."

Emphasizing her family's pure intentions, Wanda adds, "I'm not talking about her money. You put money over here. They're people in this family that care more about the well-being of my sister than anyone. All I want is for my sister to be healthy."

Williams' whereabouts are currently unknown by her family

As the documentary's title foreshadows, Williams' family currently can't answer the question of where she is.  

"I don't know the exact location of where she is, but I know that she is in an environment that is helping her to heal, emotionally, psychologically and physically," Wanda says when probed by producers. "That's what I hope happens when she gets home."

Asked where home is, she admits, "I don't know. I don't know what's going on with the apartments in New York."

In one of the last scenes in the documentary, the apartment that Williams was shown in throughout the entirety of the taping is seen vacant. When the producers, who stopped filming in April 2023 amid concerns for Williams' well-being, ask Alex if she was aware that her aunt's apartment was cleaned out and put on the market while she was in a wellness facility, she confesses that she wasn't. Wanda also says that she hasn't had contact with Williams' guardian in over a year and that access to her sister is sporadic.

"I communicated with her in July," she says. "She will call me and then all of a sudden there is no communication." Finnie also spoke about this on The View last week.

The family is hopeful about her prognosis, though. Their perception on her health seemingly aligns with the statement that was released by her team Thursday, in which they claimed, "Wendy is still able to do many things for herself. Most importantly she maintains her trademark sense of humor and is receiving the care she requires to make sure she is protected and that her needs are addressed."

Shelby, at the end of the documentary, says that Williams is currently sober and getting back to her old self, which Wanda appears to have seen evidence of through phone communication.

"Wendy's in a more positive place and in a stronger place than she was a year ago," she says in the doc. "It's almost like I'm talking to Wendy from years ago. It really is. She said, ‘Family is very important, Wanda. I realize that I need to be with my family. I'm ready to move on.' Her resilience is unparalleled, it's unmatched," Wanda adds through tears. "I know people go through a lot of stuff every day. She has withstood attack after attack after attack. She is my hero because even now with what she's going through, to be able to withstand it and still come back, to still have conversations, that takes a special person. So she will always be my hero. I will do whatever has to be done to help her be healthy."

The end title card for the series says that, at the time the documentary was completed, Williams' family was still unable to see her in person. It adds that, per New York State Mental Hygiene Law, Article 81.31, the court must conduct a review of her guardianship every year.

Read the biggest revelations from night one of Where Is Wendy Williams?

More from The Hollywood Reporter

  • How to Stream 'Where Is Wendy Williams?' Documentary Online
  • Wendy Williams Breaks Silence on Aphasia and Dementia Diagnosis: "Immense Gratitude"
  • Wendy Williams' Guardian Sues Lifetime Parent Company A+E Networks Ahead of Documentary

‘Where Is Wendy Williams?' Doc Explains TV Host's Guardianship as Family Questions Her Care

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