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Summary: A recent narrative by Nancy Drinan in the Journal of Participatory Medicine describes an excellent example of the participatory medicine model. The Drinan family was challenged to care for two similarly disabled sisters with complex medical and social needs. By becoming an engaged advocate for the care of her sisters and fostering a well-functioning health care team, Ms. Drinan dramatically improved the health of her sisters. In this commentary, I give the provider’s perspective and touch on some of the principle tenets of participatory medicine that guided our work together.
Keywords: Advocacy, developmental disability, guardianship, brain disease, epilepsy, frontal lobe impairment, metabolic damage, behavioral challenges, mental health, shared decision making, collaborative decision making, participatory medicine.
Citation: Hoch D. The rewards of being a participatory health care provider. J Participat Med. 2011 Dec 14; 3:e51.
Published: December 14, 2011.
Competing Interests: The author has declared that no competing interests exist.

Nancy Drinan describes a remarkable journey in her recent article published by the Journal of Participatory Medicine. The narrative, “Three Sisters, One Voice,” describes her family’s struggles to improve the care of her siblings. As the neurologist in her participatory team, I encouraged her to tell her story and offered to present the physician’s perspective.

The Drinan family faced the challenge of raising two similarly disabled people, behaviorally functional and interactive but suffering from seizures, the sequelae of anticonvulsant drug treatment, and a variety of behavioral problems. Because of Nancy Drinan’s strong leadership and something akin to “natural selection,” the clinicians who ultimately comprised the care team became a model for participatory medicine. In retrospect, Nancy and the team of care providers who addressed her sisters’ complex medical disorders embraced a participatory medical model well before the term was coined. Although not medically trained, it was clear to Nancy that her sisters were very ill and deteriorating. It was also clear to her that local health providers were not, for whatever reasons, able to address her sisters’ complex medical needs.

We may never fully know or understand why the initial team failed these patients. It is fair to say that complex medical problems take more time to manage, and this impact on a provider cannot be understated. The Drinan sisters usually presented as a “pair”. Back-to-back appointments for the sisters with the same provider may sound efficient and convenient, but when each case is this complex, a clinician will feel overwhelmed. Further, I believe that some of the “efficiencies” encouraged by those who pay for and administrate health care for the disabled exacerbate the problem. The provider is expected to take care of as many problems as he or she can, and refer judiciously to specialists when needed rather than participating with patients as a coach and coordinator of care as a co-leader of the care team,. Finally, individuals with limited communication skills and little knowledge about the logistics of health care are far less likely to participate in their care. Strong family or community advocacy is needed. Not many people have a sister like Nancy and our system of care for the disabled rarely supplies one. As a result, the Drinan sisters and others with similar physical and mental challenges are often underdiagnosed, undertreated, and underserved.

In this case, Nancy’s engagement and advocacy were pivotal: Nancy and I were able to put a medical team in place that, over time, was able to reverse many chronic conditions that arose directly as a result of poor disease management, insufficient diagnostic information, and failed therapies. Eventually, important changes to the level and quality of care resulted from the combined efforts of the new team, but this required great patience and perseverance on the part of all stakeholders, perhaps especially the patients who understood the least because of their cognitive impairments, and were subjected to the most in terms of numerous appointments, tests, new medications, and at times, unpleasant side effects. In spite of all, they were remarkably cheerful and cooperative throughout what was often a grueling and disruptive process.

While teams such as the one featured in this story may be more likely to form in large, multispecialty practice institutions, the qualities that make for a participatory medical experience and promote excellent care can be identified and fostered in many settings. From my perspective as a clinician, the critical aspects of this unique model include the following:

Mutual respect. It was hard to take a medical history and not immediately respect the struggles of these two women and their caregivers: Nancy and their elderly mother. Given the enormous amount of work needed to manage these very complex cases, it was quickly evident to me, as a provider, that success hinged on everyone’s input and cooperation, including other specialists who could manage and treat the several known or suspected conditions shared by the sisters. As a neurologist prepared to diagnose and recommend therapies for epilepsy, I recognize that I am much more effective if the epilepsy is seen as part of the whole person. When that person’s medical condition is complicated, it is important to assemble a team carefully rather than leave it to chance. Therefore, we consulted other specialists who were like-minded. This is how we were able to generate a respectful relationship from the outset that has endured for nearly 15 years.

An assertive interpersonal style. The health care provider team was comfortable with an assertive communication style. From the patient’s or advocate’s standpoint, this requires challenging providers, honestly and openly, and bringing out the best in them. The health care provider must avoid a defensive attitude and should be willing to say, “I don’t know.” The team should also watch for and eliminate any aggressive or passive-aggressive behaviors.

Clear and effective communication. While the telephone was used for emergencies, regular and inclusive use of email and secure online messages were the mainstay of communication for the team. While the patient portal deployed by our health care system has strengths, eg, access to results, medication lists and secure messaging, it does not support teams very well. This team used email extensively since all team members could be included and allowed the sisters’ direct care providers to quickly and easily inform Nancy, the nurses, and physicians about any change in status. At the time, we did not have a secure email messaging option; while there was some concern about privacy, that concern was secondary to achieving effective, accurate, and timely communication.

Distribution of work. Participation is not just about sharing data and making sure concerns are heard. The most satisfying aspect of working with this team lay in being able to focus on my own area of expertise as a neurologist specializing in seizure disorders. Moreover, since I was not encumbered by having to serve as “team leader” and driver of all major treatment decisions — a situation that all too often characterizes my interactions with nonparticipatory patients — I was able to focus on managing the anticonvulsants, educating Nancy and her sisters about neurologic issues, and communicating my views to the rest of the team. It was a great relief to me that I did not have to “micromanage” followup care (eg, arrange for blood draws at the local lab, request lab results be faxed to my office, or send reminders to take medication according to proper dose and frequency.) I was spared because Nancy and her sisters’ direct care providers assumed these responsibilities and, because of their day-to-day involvement in plans of care, helped the team achieve treatment goals relatively quickly and safely.

Each member of the team was also able to apply his or her expertise and skill in such a way that the patients were always engaged, consulted, and brought actively into the process. In the setting of an evolving model of participatory care, I was not only able to learn from my experience, but from the experiences of other team members, perhaps especially from the patients themselves. For example, I learned about resources the Drinans had discovered within the hospital and in their community, about the correct use of medications to help with mood and affect from our neuropsychiatrists, and about the more general medical issues addressed by their respective primary care physicians.

Patience. Although the poor health of the Drinan sisters at initial intake suggested great urgency, in actual practice, the approach to care was not hurried. The provider team was comfortable with being honest and admitting that we could not change the sisters health immediately. We found that a realistic perspective was surprisingly acceptable. To paraphrase Nancy Drinan at the time, “They did not get sick overnight; I do not expect them to improve in a couple of weeks.” In this environment of mutual trust and respect, there was no need for any of us to stamp our feet or scream for results.

Community. In the words of Nancy Drinan, there was a “team behind the team” that was not based at the medical center. This community-based support is well described in her narrative and critical to participatory medicine. Without a social network that consists of local stakeholders who are equally committed to the goals of delivering compassionate, patient-centered care and to implementing an array of services that enable persons with disabilities to achieve some degree of independence that includes access to optimal medical care, a comprehensive “borderless” model of participatory medicine cannot be realized. The health care provider team is, perhaps, the weakest link in the system. In the modern era, providers rarely live in the community were the patient lives. It is difficult to know the social milieu in which the patient lives. Luckily, members of our team were willing to use a variety of electronic communication strategies to stay in touch with members of the community as needed and supported the local team extremely well.

While there are many other circumstances and relationships that may lead to participatory medical care, I suspect strongly that the key factors giving rise to the excellent outcomes in this remarkable case are common to most effective models of participatory. Many of the features that I describe are about “individuals” working together to create an effective team. While much of the responsibility for participation lies with the individuals in the therapeutic relationship, I believe our institutions are also slowly starting to support the model as well. For example, most new treatment guidelines from major professional societies now attempt to assess outcome in much more patient-centered ways. Of relevance to the present commentary, the American Academy of Neurology epilepsy treatment guidelines now define success when the patient is free of both seizures and side effects. Such measures of quality require providers to ask questions and understand how treatment has affected the patient’s life. This is an excellent step toward a more participatory model.

I am now well into my second decade of caring for the Drinan sisters. In the intervening years, I have tried very hard to incorporate the important values and lessons learned from this extraordinary experience into my relationships with all my patients. For this, I have the Drinan sisters to thank.

Copyright: © 2011 Dan Hoch. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.