Note: if you do not use Twitter an explanation of this post’s title may be in order. #WhyPM is the Twitter hashtag we have been using collectively to announce the launch of the Journal of Participatory Medicine and to mention topics of interest from the Journal and the Internet.


So what is Participatory Medicine?

Simply put “Participatory Medicine (PM) is a model of medical care acknowledging the central role of the e-patients in medicine and requiring their active participation and engagement, because health professionals can no longer do it alone.”

As we put the finishing touches to the Journal of Participatory Medicine, it is ever clearer that various stakeholders have different views of what constitute participatory medicine. In particular, our different backgrounds are shaping how far we accept the central role of the engaged and networked patient in the brave new world of PM.

Using various social media, I have tried to iteratively refine the initial definition crafted in Feb 2008. The Wikipedia definition remains the single most quoted definition, but I have come to believe we should provide the much simpler one, above. As Alan Greene, MD commented in the crowdsourced definition of PM: “The ‘participation’ in Participatory Medicine isn’t just a patient participating with a doctor, but a patient participating in improving his or her own health, in constructive collaboration with a network of others with the same goal.”

On October 22, 2009 we will officially launch the Journal at the yearly Connected Health Symposium from the Center for Connected Health. You should read “Why the Journal of Participatory Medicine?” to understand the scientific reasoning behind the journal. But you should also understand that the initial push for the Journal was a patient advocate longtime call for the need to publish scientific data about PM, in a format clinicians could understand and validate, in order to convince them that engaged, informed and networked patients are significantly advancing  the modern practice of medicine and are a valuable resource instead of being a significant nuisance.

If you want to understand how far we have advanced in 18 months, have a look at the Wikipedia discussion page about PM! Here is a nice quote from Apr, 9, 2008:

Not that I’m unsympathetic to this article’s perspective. I am. But this reads like advocacy to me. A review of Wikipedia:What_Wikipedia_is_not shows two problem areas for this article:

  • Wikipedia is not a soapbox.
  • Wikipedia is not a crystal ball.

Thus, Wikipedia articles should not speculate about the future, and should not advocate for a particular perspective that can’t be construed as fact. To my reading, this article does both of these. It speculates about the future of Participatory Medicine, advocates for a concept of Participatory Medicine that is not widely shared, and ties Participatory Medicine to the e-patient concept, which is also not widely shared. But moreover, this particular nexus between Participatory Medicine and e-patient has little support I can find, outside of this Wikipedia article itself.”

Today, this viewpoint seems so disconnected from reality. Every day my email box fills up with Google Alerts about e-patients and participatory medicine. A growing number of opportunists are trying to cash on the fast growing popularity of the 2 terms. Most significantly no one huffed and puffed at this year’s Health 2.0 conference and at the Institute of Medicine when I said that the Patient is the most underutilized resource in the health care system.

Why Call It Participatory Medicine?

A year after my soulmate, Tom Ferguson MD, passed away, the e-patients scholars working group, the group he had created, seemed to wander aimlessly, without a cause or a concept that could help us move further along the route of patient self-empowerment. With our fast approaching yearly meetup, we needed a topic that would rejuvenate the common passion we had developed collaboratively, over a period of years, while providing feedback to Tom while he was writing the seminal white paper “e-patients: How they can help us heal healthcare.”

This was just one of a confluence of events, pushing us to come up with a memorable term. Health 2.0 had recently been coined and I was very aware of the theoretical and commercial impact that the term web 2.0 had in a short time. I had missed the first Health 2.0 meeting because, at the time, I did not see how the ACOR cooperative of cancer online communities could be categorized as Health 2.0 or social media or described with the fast growing set of Web 2.0-related terms (I was obviously mistaken, as we can see now). But it was getting clear that what could be observed in our online communities and the many other online communities I was following was a true transformation of the medical delivery system, with a growing importance of the informed patient, both as an individual and as a member of 1 or more specialized online communities. At the same time, I was noticing the evolving role of the medical online communities and their seemingly unlimited power to constantly innovate, in meaningful ways, in areas as diverse as information reporting or Patient-Driven Research (PDR).  What was common in all these stories was the active participation of the patients or their caregivers at all levels of the care process. That’s when I discovered the definition of Participatory Design in Wikipedia, which I’ll reproduce here. Sorry, it is long, but as you will see, it is relevant!

Participatory design is an approach to design that attempts to actively involve the end users in the design process to help ensure that the product designed meets their needs and is usable. It is also used in urban design, architecture, landscape architecture and planning as a way of creating environments that are more responsive and appropriate to their inhabitants and users cultural, emotional, spiritual and practical needs. […] It is important to understand that this approach is focused on process and is not a design style. For some, this approach has a political dimension of user empowerment and democratisation. […]

Participatory design can be seen as a move of end-users into the world of researchers and developers, whereas empathic design can be seen as a move of researchers and developers into the world of end-users. There is a very significant differentiation between user-design and User-centered design in that there is an emancipatory theoretical foundation, and a systems theory bedrock (Ivanov, 1972, 1995), on which user-design is founded. Indeed, user-centered design is a useful and important construct, but one that suggests that users are taken as centers in the design process, consulting with users heavily, but not allowing users to make the decisions, nor empowering users with the tools that the experts use.

Now, simply replace design with medicine and users with patients and reread that definition!

We had been unhappy with the term patient-centered care for years because, it has been usurped by many health professionals to protect the status quo while paying lip service to the patient, as a member of the care team. But suddenly, here was a term that could really describe the central role of the patient in the contemporary medical world where we are all networked and have instant & usually free access to more sources of scientific and medical information than most health professionals even know.  And it was a virgin term. No Google presence! Whatever definition we chose, we had the rare chance to “own” the term and its definition.

How does PM relate to Healthcare Reform?

“Health care should be safe, effective, patient-centered, timely, efficient and equitable.”

This Institute of Medicine (IOM) call to arms was written in 2001, before most of the IOM members had ever thought, looked, let alone understood the real impact of the Internet on the democratization of medicine and its ability to disseminate widely and virally new medical knowledge to a fast growing audience of concerned lay people.

In the mid 90’s a concerted effort took place at the IOM to confront the need of fundamental changes in the American health care delivery system. It resulted in the formation in June 1998 of the Committee on the Quality of Health Care in America. Charged with developing a strategy that would result in a substantial improvement in the quality of health care over the next 10 years, the Committee produced 2 seminal reports. The first, about patient safety, published in 2000, “To Err Is Human: Building a Safer Health System” concluded that tens of thousands of Americans die each year from errors in their care, and hundreds of thousands suffer or barely escape from nonfatal injuries that a truly high-quality care system would largely prevent. The second “Crossing the Quality Chasm: A New Health System for the 21st Century” laid out the basis for profound reform. As the patient safety report was a call for action to make care safer, the second report was a call for action to improve the American health care delivery system as a whole, in all its quality dimensions, for all Americans.

The Committee proposed six aims for improvement to address key dimensions in which the current health care system functions poorly.

  • Safe—avoiding injuries to patients from the care that is intended to help them.
  • Effective—providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit (avoiding underuse and overuse, respectively).
  • Patient-centered—providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.
  • Timely—reducing waits and sometimes harmful delays for both those who receive and those who give care.
  • Efficient—avoiding waste, including waste of equipment, supplies, ideas, and energy.
  • Equitable—providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socio- economic status.

While the Committee was working hard to produce these 2 reports, millions of Americans were learning to use the Internet to get the answer the system was unable to provide.  A real and potent example of a disruptive technology, the explosion of patient-generated Internet resources, associated and facilitated by the revolutionary availability of all scientific abstracts helped citizens to develop solutions that matched their problems. For the first time ever, new healthcare resources had been developed first by asking patients what they needed, instead of trying to force them to use services and tools that had been created to satisfy health professionals.  This historical confluence of the birth and growth of Internet-mediated patient-centric resources with the realization by the Nation’s medical elite of the need to improve the 6 aims has certainly facilitated the acceptance of PM has a piece of the healthcare reform puzzle.

What is the future of PM?

Some of us believe there can be no effective healthcare reform, unless the patient is brought at the table and most reform elements are rethought with the patient seen as the center and raison d’etre of the health care system. This can only happen if the American society really accepts the concept of the engaged and networked patient as an equal member of the care team. Our success in producing a valuable journal focused on these issues will be fundamental to promote this agenda.

Please help us make the Journal the great resource we believe it can be and PM will gain much importance in helping the Nation to achieve any of the six aims for improvements. As the IOM said:

“A health care system that achieved major gains in these six dimensions would be far better at meeting patient needs. Patients would experience care that was safer, more reliable, more responsive, more integrated, and more available. Patients could count on receiving the full array of preventive, acute, and chronic services from which they are likely to benefit. Such a system would also be better for clinicians and others who would experience the satisfaction of providing care that was more reliable, more responsive to patients, and more coordinated than is the case today.”

Some of these aims can be uniquely achieved by letting engaged and networked patients/caregivers share and develop new collaborative tools and platforms to further learn and to share and disseminate that knowledge with others, lay or professionals.

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