Improving health care:
Journal of Participatory Medicine
will document methods that work
for patient/provider collaboration

Launch at Connected Health Symposium
features essays by visionaries in
health care, Internet, high tech, business, and sociology

Patient engagement and patient empowerment are popular topics, with hundreds of thousands of Google hits, but there’s precious little information on how to do them well. A new academic journal being launched this week, the Journal of Participatory Medicine, aims to change that.

Created by experienced pioneers of the “e-patient” movement, the Journal will be introduced this week at the Connected Health Symposium in Boston, hosted by the Partners HealthCare Center for Connected Health. The Journal is an official publication of the Society for Participatory Medicine, founded in 2009 by the patients and physicians who have worked together for several years at e-patients.net.

“Because health professionals can’t do it alone”

Participatory Medicine is a new approach that encourages and expects active patient involvement in all aspects of care. It builds on the work documented at the e-patients.net blog, whose slogan is “Because health professionals can’t do it alone.” The group’s landmark 2007 paper “E-Patients: How They Can Help Us Heal Healthcare” tells many stories of engaged, empowered e-patients who substantially improved their own outcome and the outcomes of others by supplementing or even going beyond what their physicians alone could do.

That paper and subsequent blog posts have further documented the stresses and information overload faced by physicians today, and flaws in today’s care delivery system and personal health data, including many anecdotes of patients who made a pivotal difference through active engagement. Now, the Journal of Participatory Medicine will move the field from anecdote to science, with articles on principles, methods and evidence-based outcomes.

Authoritative and accessible; peer-reviewed by patients and health care professionals

The Journal will be written and peer-reviewed by and for all stakeholders: patients, healthcare providers, caregivers, researchers, payers and policymakers. Physicians who have practiced in the participatory model report greater satisfaction when they work with patients who are actively engaged. Similarly, participatory patients say they feel empowered, heard, and more in control.

Free continuous updates online

The Journal will publish continuously and will be freely accessible to the public at http://jopm.org. Following the inaugural issue in early 2010, articles will be published as they are reviewed, accepted, and edited; there may also be single topic special issues. Email alerts will inform subscribers when new material has been posted. Anyone can sign up to receive these alerts at http://jopm.org/register.php

Available online now is a collection of invited essays that serve as the “launch pad” from which the journal will grow. In their opening editorial “Why the Journal?” the editors write, “We consider this introductory issue an invitation for you to join us as we create a robust journal that will serve a growing community of concerned individuals and professionals.”

Mission: To transform the culture of medicine

The Journal’s mission is to transform the culture of medicine by providing an evidence base for participatory health and medicine. It aims to advance both science and practice, focusing on six content areas: research articles, editorials, narratives, case reports, reviews, and updates on related research in other media. It will explore how participation affects outcomes, resources, and relationships in healthcare; which interventions increase participation; and the types of evidence that provide the most reliable answers.

Importance of a broad-based peer review process

The Journal uses a new, broad-based peer review process to significantly improve on traditional academic journals. While still managed by experienced journal editors, JoPM’s peer review process will be open to a far broader set of minds for scrutiny of methods and analysis. Improved accuracy and effectiveness are vital as the population ages and healthcare costs continue to rise.

In the first issue of JoPM, Richard Smith MD, editor of the prestigious British Medical Journal for 25 years, writes that “most of what appears in peer reviewed journals is scientifically weak.” This echoes the words of Marcia Angell MD in The New York Review of Books, who wrote in January “It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.” Considering the pivotal role that journals play in policy and treatment decisions, JoPM’s broad-based process aims to improve the reliability of the process and the resulting research.

Bringing thought leadership from many disciplines to healthcare

Because of the complexity and size of the healthcare challenge, the Journal of Participatory Medicine invites participation from all disciplines that can help.

Leadership of the Journal and the Society is shared between physicians and laypeople.

• Co-Editors are Jessie Gruman, PhD, Founder and President of the Center for Advancing Health, and author of AfterSchock: What to Do When the Doctor Gives You-or Someone You Love-a Devastating Diagnosis; and Charles W. Smith, MD, Executive Associate Dean for Clinical Affairs and Professor of Family and Community Medicine, University of Arkansas for Medical Sciences, and Founder of eDocAmerica.
• Deputy Editor is Alan Greene, MD, Founding President of the Society, Co-founder of DrGreene.com, Clinical Professor at Stanford University and Chief of Future Health at A.D.A.M., Inc.
• Managing Editor is Sarah Greene, publishing and new media entrepreneur with three startups in science, health, and medicine acquired by Wiley, Elsevier, and Thomson Healthcare.
• Founding Co-Chairs of the Society are Daniel Z. Sands MD, MPH of Cisco Systems and Beth Israel Deaconess Medical Center, and his patient “e Patient Dave” deBronkart, of ePatientDave.com and TimeTrade Appointment Systems.

Some of the articles featured in the first issue:

• Investor and futurist Esther Dyson on “Why in the world ‘participatory medicine’?”
• Longtime JAMA & Medscape editor George Lundberg MD and former AARP board chair Joanne Disch PhD, RN: “Why healthcare professionals should be interested in PM”
• Kate Lorig RN, Dr.P.H., Director of Stanford School of Medicine’s Patient Education Research Center: “Why people should be interested in PM,”
• David Lansky, CEO of Pacific Business Group on Health and former Senior Director at the Markle Foundation, on “Why payers should be interested in PM”
• Kurt Stange MD, PhD, Case Western Reserve University and editor of the Annals of Family Medicine, and Gilles Frydman, founder of the ACOR.org network of cancer communities, on “Building an interdisciplinary field of inquiry and practice”
• Richard Smith MD, former editor of BMJ, Peter Frishauf, Medscape founder and Musa Mayer, famed breast cancer activist, on “The Value and Questions of Peer Review”
• and many more articles

Launch is the closing event at Connected Health Symposium

The official launch of the journal will occur on Thursday, October 22 at 3:30 PM as part of a panel discussion about the “Changing Role of the Patient in Health Care and the Changing Rules of the Game for a New Publication.”

Moderated by Co-editor Jessie Gruman, the panel will include Gilles Frydman, Founder and President of ACOR (Association of Cancer Online Resources) and Editorial Board Member; Dan Hoch, MD, PhD, Dept. of Neurology, Mass. General Hospital, Co-founder of Braintalk, and Editorial Board Member; Deputy Editor Alan Greene, MD, and Co-editor Charles W. Smith, MD.

The Society chose to launch its journal at the Connected Health Symposium because of the long and sustained commitment Partners HealthCare and the Center for Connected Health have had to exploring innovative and effective ways to deliver quality healthcare outside of traditional medical settings. According to Gilles Frydman “Many of the editorial advisers and board advisers for the journal have been working with the Center for Connected Health for years. We are delighted to be partnering with them for this launch.”

About the Society for Participatory Medicine

The Society for Participatory Medicine was founded in 2009 to learn about and promote PM through writing, speaking, social networking, and other channels. It builds on the work of Tom Ferguson, MD, who envisioned the e-patient movement within months of the birth of the Web browser.

Society membership is open to anyone who shares the belief that PM should be the operative model for healthcare, that all involved parties share in a collective decision-making process, and that the patient is central to that process. Through PM we can teach patients to take responsibility for their own health and providers to effectively invite patients into this.

About the Center for Connected Health and the Connected Health Symposium

The Center for Connected Health, a division of Partners HealthCare in Boston, develops innovative and effective solutions for delivering quality patient care outside of the traditional medical setting. The Center engages in pioneering research in a wide range of connected health-related areas and works to advance the field through its convening and publishing activities. The term “connected health” reflects the range of opportunities for technology-enabled care programs and the potential for new strategies in healthcare delivery. The Connected Health Symposium asks how information technology – cell phones, computers, the Internet and other tools – can help people manage chronic conditions, maintain health and wellness, and age with independence.

Journal of Participatory Medicine: http://jopm.org or www.facebook.com/JourPM
Follow the journal on Twitter: @jourPM and #WhyPM
Society for Participatory Medicine: http://participatorymedicine.org or www.facebook.com/participatorymedicine
Connected Health Symposium: http://www.connected-health.org/events/symposium-2009.aspx

Press contacts

• For the Journal of Participatory Medicine: Gilles Frydman, 212-300-5900
• For the Society for Participatory Medicine: Cheryl Greene, 925-964-1793 Office; 925-639-5517 Cell; CGreene@DrGreene.com
• Or email editors@jopm.org

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.

In another post Gilles Frydman discusses “Why Participatory Medicine?” Here, the co-editors do a terrific job of answering the hand-in-glove question “Why this Journal?” It’s clear and compelling:  

Why the Journal of Participatory Medicine?
Jessie Gruman, Ph.D. and Charles Smith, MD
Co-Editors-in-Chief

Achieving the benefit of safe and effective health care has never demanded so much from so many. Each of us has a role, and that role is changing with advances in technology and the delivery of care. No player – patient, care-giver, clinician, administrator, or payer – is expendable in the effort to improve the prevention, treatment and management of disease.

But the imperative to transform health care from a professional service delivery system to a mutually shared enterprise in which individuals – sick or well – play an active role has yet to be fully recognized by many clinicians, other professionals and the public. The development of new technologies has allowed us all to learn and communicate more efficiently and work to forge new ways of interacting with one another. But many remain unaware or unconvinced that advances in health care require a change in their own behavior to accommodate the reality that people now must participate actively in their care if they are to benefit from it.

Changes in health care are inevitable. The question is how can we ensure that all the parties keep pace with and gain from new developments? What does health care look like when it welcomes and supports individuals’ involvement in their care to the extent they are able? What will it take to shift the culture of medicine and the organization of care to respond to this imperative? What will make it possible for individuals to adapt to new expectations for active involvement and to act on their new responsibilities?

These are serious questions that require thoughtful consideration and a range of evidence to answer. Providing a venue for both is the purpose of the Journal of Participatory Medicine.

Participatory medicine is a cooperative model of health care that encourages, supports and expects active involvement by all parties (clinicians, patients, caregivers, administrators, payers and communities) in the prevention, management and treatment of disease and disability and the promotion of health.

The Journal will build the field of participatory medicine by serving as a single source of articles that demonstrate and illustrate what it is and what difference it makes in health outcomes. The types and categories of articles that we will consider for publication can be found in the Instructions to Authors[linked]. Because it is a new journal publishing multidisciplinary articles on topics within a field that has not yet been well defined, we have established parameters [linked] that define the journal’s range of interest. We anticipate that these parameters will be refined as the field develops.

The Journal of Participatory Medicine will publish continuously. Following the inaugural issue (due in early 2010) we will publish articles as they are reviewed, accepted and edited rather than in discrete monthly or quarterly issues. The journal will use the Open Journal System publishing platform developed by the Public Knowledge Project. We will use an all-electronic submission, editing, and publishing process. All research, clinical review, and case report submissions will undergo peer review prior to a decision to accept, reject or reconsider after revision. We aspire to an open review process that initially will be voluntary.

Our experience soliciting and editing the essays in this first issue demonstrate that the words “participatory medicine” mean very different things to different people. We invited essays from authors from a variety of backgrounds who have publicly committed to ideas that are central to participatory medicine. Each one writes in this issue about an aspect of participatory medicine from their own perspective, but each describes a slightly different set of concerns with different implications for future action. This is as it should be: The task of the journal is to piece together, from among multiple disciplines, professions, settings, roles and interests, the evidence and elements that will lead to a common vision — and eventually the reality — of health care that encourages, supports and accommodates the participation of individuals in their efforts to live long and well.

As co-editors, we are committed to modeling full participation in the publication of this journal. We function as a team, Charlie as a physician and Jessie as a sometimes patient and permanent consumer, both with solid experience in journal editing and production. We work closely with the Journal’s steering committee, editorial board, and advisory committee — each composed of individuals representing the broad range of health stakeholders – to bring their best ideas to the table for consideration.

We invite all professionals, patients, caregivers, former patients, health plan administrators, employers, union representatives, hospital administrators, clinicians, politicians, and policy makers to participate as well. We are just getting started. Join us. Read. Respond. Volunteer to review submissions. Submit your own work and your ideas.

As the editors of this journal, we share the belief that in order for people to benefit from the care available to them, health care must be participatory. The stakes of non-participation or ineffective participation are too high for individuals and the nation. We will dedicate our efforts in this journal to realizing the change this entails using the tools of science, critical review, consultation, experience and consensus.

The Journal of Participatory Medicine is an official publication of the Society of Participatory Medicine, a new nonprofit organization dedicated to defining, shaping and advancing the field. We acknowledge the group of determined, forward-thinking professionals led by the late Tom Ferguson, MD, that years ago began planning how to enable more effective provider/patient collaboration. This journal is the result of his belief that health care must involve much more active collaboration between patients and providers.