Patient-Centered Care

Participatory Healthcare: Lessons from Listening to Patient Stories

I recently interviewed a great many patients and caregivers as a part of research for the book, Participatory Healthcare: A Person-Centered Approach to Healthcare Transformation, published in August by CRC press. Through the process of interviewing the 27 individuals whose stories are represented in the book, I grew to appreciate how important it is to make room for patients to tell their stories—not just because of the things we learn about them, not just because it can be healing for patients to talk about their experiences–but because of the things we learn about ourselves and how our systems really work—or fail to work—for the people they are supposed to be serving.

Healthcare worker with a patient

Several persistent themes emerged from the in-depth interviews with patients and caregivers that offer important insights both for other patients and caregivers and for those of us who are working to design a 21st century health system that is convenient, connected and engaging.

Why you must take responsibility for your own care

The experiences of the patients and caregivers we interviewed make it clear that today’s healthcare consumer must advocate for him or herself to get desired levels of care. The system generally is too fragmented for anyone to assume that you can be passive about your care, that it will be coordinated without your involvement, or that each person who shares responsibility for your treatment will be equally aware of your history, your preferences and your current state. A few examples highlight why this matters so much:

  • Catherine Rose recounts what it took to get the right consistency of formula approved by her insurance company for her daughter’s feeding tube. Despite repeatedly providing factual evidence that the “approved” formula would result in a costly hospitalization, faxing and refaxing prescriptions and authorizations, Catherine only got action when she resorted to publicly tweeting and blogging about her experience.
  • Brittany describes going for 10-days with a broken femur because she has a high pain threshold and didn’t fit the ER doctor’s picture of how someone with a broken femur behaves. At each step in her journey toward healing, she experienced disconnects that required her to push for integration, communication, and coordination.
  • Hugo Campos describes how difficult it has been to get access to the data from the Implantable Cardiac Defibrillator (ICD) that lives in his chest. Despite the fact that it is implanted in his body, the medical device manufacturer considers itself the “owner” of the data it produces and has resisted all of Hugo’s attempts to get access to his own data. As a result, Hugo, the person for whom it is a life-or-death issue, is the last person to be notified when there’s a problem. Hugo was recently honored as a White House Champion of Change for raising attention to this issue.
  • Beth, who received treatment for stage four breast cancer in an integrated delivery system, was pleased with her treatment and the partnership she was able to establish to get the care she wanted. Nonetheless, when she was hospitalized for a respiratory infection in the middle of her treatment, she had to remind administrators that her immune system was compromised and that it would be unsafe for her to share a room with someone else.
  • Nancy began to understand how important it was to take responsibility for her own care only after experiencing an untreated MRSA infection and an unresponsive surgeon. Getting the care she needed to walk again meant she had to become her own advocate and research alternate providers and options.

Why it matters to design systems and processes for and with patients and caregivers

Walking through patient experiences in depth, it is easy to see the ways that healthcare systems still are too frequently designed for the convenience of physicians and staff rather than to provide the best experience for patients. The Flip the Clinic initiative has highlighted some of these incongruities, but it is worth mentioning them again, as we tend to take for granted the disconnects in our systems: long waits; minor inconveniences that, multiplied, become major time wasters for patients; weaknesses in our systems that require patients and caregivers to play the roles of HIE, medical records librarian, quality monitor.

  • Paul, a physician, describes the difficulty of getting consistent, convenient, and proactive care despite the fact that as a physician he could speak the language of the health system and navigate on his own behalf. He got great care in a great system, but even so, was able to highlight numerous points where it could have been exceptional if the system had paid more attention to the lived experience of patients.
  • Dr. Sasha Kahn pours out her grief over her mother’s death as the result of failures in care transitions between her mother’s primary care clinic and her hospital. The errors—and her mother’s death—were preventable if the system had been designed to pay attention to hand-offs in care settings and ways to ensure the right information got to the right people at the right time.
  • Dana Lewis tells of taking action to design her own artificial pancreas as a result of trying to solve problems with her continuous blood glucose meter (CGM). Her journey started with frustration—and fear—that she would sleep through the soft tones of the low-blood-sugar alarm on her CGM. Fixing the volume of the alarms was the first step in a journey that led Dana and her fiancé and now husband, Scott, to design a system that could predict the levels of insulin she needed and dispatch them for her. Their work is pushing medical device manufacturers to figure out how to do the same.
  • Jess Jacobs tweeted and blogged about her experiences trying to get quality care for a combination of difficult medical problems. Her experiences showed that even someone with deep knowledge of the healthcare system and a commitment to be her own advocate can have difficulty getting coordinated and respectful care. Her tragic death this summer motivated many of her followers to focus on ways to make care better for unicorns like her. The record of frustration she left points to systemic changes we still need to make in how we design and deliver care.

The importance of connection

Although many of the patients we interviewed described frustrating encounters with healthcare as a system, almost everyone also had at least one positive encounter with an individual whose empathy and caring transformed the experience. As we talked to individuals, it became clear that people want convenience and digital tools in their interaction with the healthcare system—but they also want connected and empathetic relationships with providers who see them as individuals and who are willing, despite the pressures of time, to engage at a human level.

Hearing people talk about the importance of those moments of human connection, it became clear that it is essential to design systems that offer both convenience and connection. We should be using digital tools to reduce the burden of administrivia for both patients and providers. Engineering systems and processes that reduce hassle can allow more time to be focused on the essential human encounter at the heart of medicine: the moment where the patient and physician together create a narrative about illness and healing.

In the words of Dr. Arthur Kleinman, an early pioneer in participatory medicine:

“An interpretation of illness is something that patients, families, and practitioners need to undertake together. For there is a dialectic at the heart of healing that brings the care giver into the uncertain, fearful world of pain and disability and that reciprocally introduces patient and family into the equally uncertain world of therapeutic action.” From The Illness Narratives: Suffering, Healing, and the Human Condition, by Arthur Kleinman, MD, 1988.

As individuals, as designers, as patients, as caregivers, we can support healthcare transformation by:

  • Taking action ourselves to be our own advocates and respect the patients and caregivers who are advocating for their own care.
  • Bringing consumers, patients, and caregivers into the design of processes and systems.
  • By engineering for both connection and convenience.

Jan Oldenburg Jan Oldenburg, FHIMSS, is passionate about using digital tools to build a healthcare system where patients and caregivers participate as partners. She currently advises and mentors startups and consults with organizations who want to understand the evolving digital health landscape as the Principal in Participatory Health Consulting. Ms. Oldenburg has broad experience within all aspects of the healthcare ecosystem, including payers, providers, and integrated delivery systems. Most recently she was a Senior Manager in EY’s Health Advisory Practice. Prior to joining EY, Ms. Oldenburg was the Vice President of Patient and Physician Engagement in Aetna’s Accountable Care Solutions organization, where she worked with provider organizations to build collaborative ACO solutions. She also spent seven years as a manager and senior manager in Kaiser Permanente’s Digital Services Group, directing strategy and implementation for web and mobile products including clinical, payment, and administrative capabilities. Ms. Oldenburg has been a principal in several consulting companies focused on using the digital capabilities effectively in healthcare to engage consumers. She is the primary editor of Engage! Transforming Healthcare Through Digital Patient Engagement, published by HIMSS press and winner of “Best Book of 2013” honors at HIMSS 2014, as well as the principal Editor of Participatory Healthcare: A Person-Centered Approach to Transforming Healthcare to be published by CRC Press in June, 2016. She also is the author of the “Personal Health Engagement” chapter in the Third Edition of Medical Informatics, published in March, 2015 and the “Participatory Medicine” chapter of The Journey Never Ends, published in March, 2016, as well as a number of articles and blog posts. Ms. Oldenburg is the co-chair of the HIMSS Connected Health Committee and a frequent speaker and commentator on patient and physician engagement issues.

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