Abstract

Summary: On the backdrop of an amazingly intense work environment is thrust a new movement, led by patients and providers alike, asking simply, “How we can do better through participatory medicine?” As a new doctor, I ask, “What on earth does this mean? How do these concepts resonate?”
Keywords: Participatory medicine, networked patients, patient-physician relationship.
Citation: Rosenthal DI. A resident’s view: what does it mean for a resident physician to be participatory? J Participat Med. 2011 Jul 18; 3:e32.
Published: July 18, 2011.
Competing Interests: The author has declared that no competing interests exist.

Background

With another July upon us, it is time for new residents to start their training in the academic medical centers and affiliated institutions. Residency training, also known as graduate medical education, is required clinical training for physicians after graduation from medical school. Depending on the clinical specialty, programs are anywhere from three to seven years of additional training under the supervision of fully licensed attending physicians. Standards and accreditation are maintained by the Accreditation Council for Graduate Medical Education (ACGME).[1] Established in 1981, the ACGME accredits over 8,000 residency programs in specialties and subspecialties.

As an internal medicine resident in a large tertiary academic medical center, my daily life is a constant drama of battling sickness in the extremely ill, learning and teaching as much as possible, and rushing home to see my son before bedtime. It’s a harried and busy life despite newly mandated 80-hour work week restrictions. At times the work/life experience can be downright demoralizing. The days start early, end late, offer little time for food or bathroom breaks, and frustratingly, even after four years of medical school and over $100,000 in medical education debt, I’ve recently calculated that my hourly pay is less than the hourly cost of my childcare. Despite these human resource challenges, the overall day-to-day professional experiences have been extraordinary.

In my short tenure, I have witnessed incredible medical advances in therapies and diagnostics. I have watched leukemias melt away as a result of treatment with bone marrow transplants. I have witnessed patients in the cafeteria rolling suitcases holding peripheral heart devices that keep their blood pumping. I have learned how to safely put needles in knees, shoulders, elbows, jugular veins, radial arteries, pleural, peritoneal, and subarachnoid spaces. I have consistently been impressed by the intelligence and compassion of my amazing co-residents. I have been part of teams that have helped extremely sick people feel better and get back to their homes and families. I have developed wonderful long-term relationships with my clinic patients, and do my best to help them live the healthiest lives possible. In more somber moments, I have learned to pronounce death and have worked to help families find peace at the end of life. I have been awed by the acumen of master clinicians and humbled by the fragility of health. On a daily basis, I witness many personal tragedies and from this, I realize that we are all patients, and canlearn to appreciate and find joy in every possible moment of health.

Making Sense of a New Movement

On this backdrop of an amazingly intense work environment, a new movement is emerging, led by patients and providers alike, asking simply, “How can we do better through participatory medicine?” As defined by the Society for Participatory Medicine, “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”[2]

As a resident, I ask, “What on earth does this mean? How do these concepts resonate?” To me, there are three main phrases within this definition that require elaboration:

1) “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.“

The language of partnership is inherent in medical culture and residency training. Shared decision making, patient autonomy, education, and empowerment are concepts taught in medical school curricula and carried out every day on the wards where residents work with patients and families to arrive at informed decisions, options, and management strategies. We strive to honor the wishes of our patients, rather than what we would wish for them. All residents have experienced the extremely sick patient who, having the capacity to make his own decisions and clearly understand the risks of leaving, leaves the hospital . “against medical advice” and despite passionate recommendations to the contrary. All residents have had difficult discussions with families of dying patients about whether to resuscitate their loved one. We often wish we could provide a more convincing argument for a peaceful dying process, rather than the prolonged, medicalized process that often ensues. As residents, we acutely feel these internal conflicts, although we ultimately respect a patient’s autonomy.

In the ambulatory setting, patient-physician relationships develop over time and can blossom into more long-term “partnerships.” Physicians can recommend various tests, therapies, and methods of working together towards health and symptom palliation. The concept of full partnership, however, is a bit of a misnomer because the provider and the patient are in completely different roles. The patient or her caregiver ultimately has the autonomy for decision-making. The provider should be a trusted consultant who can minimize bias and provide recommendations based on expertise and experience. Providers, however, must make these recommendations cognizant of their duty to “do no harm” and, therefore, cannot perform a harmful surgery or risky test solely because of a patient request.

2) “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

What does it mean for a patient to be “networked”? This is intentionally defined broadly. It could signify patients who are networked to other patients, or perhaps simply connected to the internet or their care provider. It is ambiguous whether the term “networked” implies a certain technology. As to the idea of patients networked to each other, I rarely know if my patients are connected to other patients. I have recommended online support groups or communities to patients but, generally, these interactions are outside of my purview as a clinician. I am and should only be privy to these types of interactions and information if the patient so wishes to share them with me.

As to how the patient is networked to the care provider, this is practice-specific and tends to be where the greatest amount of innovation and financial investment in the past five years has been made. It is critical not to confound the more general, long-lasting participatory medicine concepts with the specific, ephemeral, current day practice architecture, IT tools, and features within our current system. Rather than feverishly debating about which IT features would truly connect and network patients to providers in meaningful ways, we should rethink the ethical constructs, incentive structures, relationships, and boundaries we want to create between that interaction, and then build the tools to foster those constructs.

My resident clinic currently offers a patient portal that links with our electronic medical record. Patients can request medication refills, view labs online, make scheduling requests, and communicate with a member of the clinical staff (RN or MD) via a secure email client. Our clinic has promoted this service widely, and I have tried to introduce all my new patients to these features. Yet the service has not been widely adopted in my panel, nor in the clinic as a whole. Only a few patients from my clinic enroll, and even fewer actually use the features. While there are clearly many various reasons (staff support, marketing, ease of use) for this lack of adoption, there are certainly some important demographic factors at play. Many residency clinics are historically associated with nonprofit teaching hospitals that were built to take care of a city’s poor and disenfranchised. Many of my patients who are older, non-English speakers, or of lower socioeconomic status don’t have regular access to a computer connected to the Internet and, thus, they may not view the patient portal as relevant to them. As the participatory medicine movement grows, there needs to be a sharp focus on how to provide access to these tools in more relevant forms such as mobile devices to all patients, regardless of age, socioeconomic status, race, gender, or language. Physicians, hospital groups, and IT developers need to reach out to disenfranchised groups through focus groups and human-centered design tactics to determine how we can meaningfully participate with these populations. Networking as patients should not only be a privilege of the wealthy, English-speaking, or computer-literate population.

3) “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

What does it mean for a patient to be the “responsible driver” versus a “passenger”? First of all, I would argue that this metaphor is inaccurate because it implies that a patient needs to reclaim the role of driver from a provider. In truth, providers aren’t in the car at all. Providers function as mechanics who can provide recommendations for routine maintenance and also provide expertise when the driver experiences engine trouble or a major accident. Similar to a car owner, a patient should ask the mechanic questions, seek second opinions, and price shop to get the best value. Unfortunately, even for the most responsible driver or patient, accidents still happen. Cancer happens. Strokes happen. Rare diseases happen. We ought to be cautious about placing responsibility and blame, even implicitly, on patients for misfortunes and illness. While we think we might know the pathophysiology of disease well enough to assign responsibility and blame, we also must remember that modern medicine, while presented in all of its certainty and glory, is still an uncertain science filled with confidence intervals, imprecision, and biases. Medicine is still only practiced, and the medicine of today will be out of date in less than ten years time. Medical school is only the beginning of medical training; residency provides the beginning of practice. We, as residents, will continue to learn and grow as clinicians over the course of our careers. We learn from our patients, and most importantly, we learn with our patients. Together, providers and patients working together to guide each other down the path of uncertainty in health and disease — this is true participatory medicine.

References

1. Accreditation Council for Graduate Medical Education. Available at: http://www.acgme.org. Accessed July 1, 2011. ↩
2. Society for Participatory Medicine. Available at: http://participatorymedicine.org. Accessed July 1, 2011. ↩

Copyright: © 2011 David I. Rosenthal. 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.