A Patient-Centric Definition of Participatory Medicine
Note: an early version was published years ago, on the e-patients blog, when Participatory Medicine was a concept only few had heard about. The biggest change a few years later is that many people are using the term and are already changing its meaning, trying to remove most of its fundamental connection to self-care and to focus exclusively on the patient-doctor relationship. To some of us, this is a travesty.
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.
It is a paradigmatic shift & frames a view of medicine currently embraced only by a minority of patients and physicians. The mission of this site will focus entirely on advocacy, information, and tools to lead and accelerate change in the culture of health care to this participatory model.
This blog is fundamentally patient centric and all of the ideas presented here are designed to optimize the care received by the patient at any time. Since a majority of care is done through self-care, participatory medicine is deeply involved in understanding, cataloging, and scientifically assessing the parameters of self-care and its impact on the medical system.
Years ago, a series of posts on the e-patients blog touched on the changing patient-doctor relationship in the care process, and both the posts and comments reflected the tension elicited when the quasi sacrosanct role of the doctor is referenced. The exchanges taking place almost daily on THCB.org, in the comment section, show how many doctors are unable to view any change in their role in a positive light. For years posters have noted how difficult it is to change how health professionals see the role of patients. This, sadly, remains the case in 2013. And more than once I have seen conclusions that for most people the Internet does not replace doctors. I personally never intended to replace my doctors, but for 21 years I’ve lived with the idea that we can be much better patients by becoming informed about our particular health issues. Once a serious medical problem has been identified, I rely on a combination of inputs from doctors, from high-quality, validated resources, and from the now-essential patient-driven online communities.
The repeated reminders that we do not intend to replace doctors seem a bit apologetic, like we are children in need of asking forgiveness for our rambunctious behavior. We have to stop. If the system was not broken in the first place, and if we were not facing serious problems, we would never have looked for solutions to deal with
- sub-optimal care.
- ever-changing recommendations from the medical gurus.
We, educated networkers, have become proactive builders. Now come Drs. Pamela Hartzband and Jerome Groopman (a highly respected doctor and author of books and articles about the modern practice of medicine, including the remarkable “How Doctors Think”). In an opinion piece in NEJM entitled “Untangling the Web — Patients, Doctors, and the Internet” they rightly noted that “nothing has changed clinical practice more fundamentally than one recent innovation: the Internet. Its profound effects derive from the fact that while previous technologies have been fully under doctors’ control, the Internet is equally in the hands of patients. Such access is redefining the roles of physician and patient.”
In our definition, participation refers to the active involvement of the patient in all aspects of their care. This transformation of the role of modern patients, and their vastly increased use of social media, is already starting to influence all of medicine, from the patient-doctor relationship to data collection, knowledge building and sharing, and even clinical research. Dr. Groopman is correct. The Internet is shifting control across the spectrum.
However, his opinion piece shows one more time that many doctors remain uncomfortable about rebalancing the control to a more transparent system built on mutual respect among all parties. A litany of horror stories is described, each based on the misuse of Internet-mediated health resources by uneducated patients, unable to make sense of what is presented to them on the Internet or even worse, suffering from la maladie du petit papier .
Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make unsubstantiated claims —[…] Falsehoods are easily and rapidly propagated on the Internet […]. Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. Doctors may be perceived as closed-minded, dismissive, or ignorant of “novel therapies” when they challenge such Internet rumors.
What is remarkable in Dr. Groopman’s paper is that there is no examination of the positive aspects of the growing number of informed, activated, and engaged networked patients. As the founder of the only really large system of medical online communities dealing with cancer (ACOR), I can testify that his characterization quoted above is naïve and damaging to the cause of improved patient care. Far from seeing unsubstantiated claims and falsehoods easily propagated, I’ve witnessed how educated people can research medical and scientific information, and apply it to their own highly personal affliction(s).
Just as patients must learn to sift through the plethora of content to find what’s meaningful to their well being, so doctors must learn to critically elicit, examine and explore their patients’ knowledge, which will often be unique to their condition and not spelled out in practice guidelines and RTCs. Without such respectful discourse, the tremendous potential value of the information age combined with social networking will be lost on the practice of medicine. Particularly since, as the BMJ wrote judiciously “healthcare professionals face a paradox; they are overwhelmed with information but cannot find a particular piece of information when and where they need it”. Just one more occasion to repeat ePatient Dave’s mantra “Let Patients Help!”
It will be a task of this blog, in addition to providing evidence that participatory medicine can improve outcomes, to demonstrate to doctors and patients alike, the value of effective models of participation. This transformation of medicine is profound and must take time and training and much trial and error. In 2013, only a minority of Internet users and patients remain educated to the degree that they can be ready and willing partners of health care professionals. And it is still only a minority of doctors that really grasp the game-changing potential of educated patients.
Trying to replace doctors in all clinical encounters would be ridiculous & self-defeating. On the contrary, we are here to augment the value of this interaction, which, unfortunately, has been subjected to tremendous abuse over the last 30 years. It is time to move on in our conversations.