Journal of Participatory Medicine

I’ve long been interested in medical self-care. The idea of patients taking responsibility of their own health and healing seems to me to be essential in the long run. Quantified Self was started in part to collect a certain kind of tool that (among other reasons) might give you data which could be used to maintain or improve your health. Data measurement is only one way to improve your health, and it should certainly not be the only way. The main thing is that health is your job, and doctors and hospitals are your assistants and advisors, but to live this way requires a lot of education, skills, and support. 

I’m not the only person to head in this direction and for the past three decades a large number of dedicated doctors, public health agents, self-care journalists, and patient activists have been working on all kinds of ways to increase the role of informed patients. The newest channel in this effort is the launch of a peer-reviewed science journal dedicated to research in the field of “participatory medicine” — as in patient participant. (Sometimes labeled Health 2.0) There is a great overlap with self-tracking and  the quantified self (although by no means is all self-tracking health related), so I think this new journal will appeal to self-trackers and self-trackers to the patient-participant field.

Epatients

This journal, called sensibly enough, the Journal of Participatory Medicine, will use an open source model (no fee to get the articles)  which is both very much in the spirit of the paradigm, but also very future-proof (free is where all journals are headed).  I serve on the Advisory Board of this publication (other advisors are Adam Bosworth, Esther Dyson, David Kibbe, MD, Howard Rheingold, Eric von Hippel, PhD, Peter Yellowlees, MD).

The short FAQ below is intended to help solicit papers for the first issue of this journal. If you are a self-tracker with interesting results or have some research about self-tracking that you think would benefit others you might consider publishing it in this journal. In addition to straight up scholarly articles, they also publish news bits, book reviews, “narratives”, and the usual journal mix of related material.

Send email to Charles W. Smith, MD Jessie Gruman, PhD, to: editors@jopm.org (there is no website at present). Mention Quantified Self.

1. What is the purpose of the Journal of Participatory Medicine (JPM)?

The Journal will bring together the best available evidence and examples of participatory medicine to:

*  Make a robust case for its value to people – sick or well -, advocates, and health professionals

*  Serve as a meeting place and rallying point for those at the leading edge of participatory medicine

*  Engage, inform and include those who have been involved in, or practicing, participatory medicine. We aim to advance both the science and practice.

The mission of the Journal is to transform the culture of medicine to be more participatory. And we believe that doing so, as the saying goes, will take a village – perhaps even a large metropolitan area! JPM constitutes a major investment of time and talent in community development.

2. What processes will we use to publish JPM?

JPM will be a peer reviewed journal published exclusively in an online journal format, using Open Journal Systems, an open source journal management and publishing system developed by the Public Knowledge Project — a nonprofit partnership between The University of British Columbia University, Simon Fraser University and Stanford University. We don’t anticipate charging a subscription fee for access to the Journal and it will be freely available to the public.

3. What will constitute the content of JPM?

Our plan is to begin publication of the Journal this fall with six types of articles. We anticipate additional content categories once we have established review criteria and procedures are running smoothly. The first issue will include one or more items from each of these six content types:

1. Research Articles. Papers describing randomized trials and quasi-experimental design studies that test hypotheses about the prevalence and impact of participatory medicine and interventions to facilitate it

2. Editorials. Commentary on the role of participatory medicine in the larger health landscape; overarching observations about secular trends, politics, policy and practice relevant to participatory medicine

3. Narratives. Videos, podcasts, and essays that showcase patients and providers and demonstrate examples of participatory medicine in action

4. Case Reports. Structured accounts illustrating individuals’ (patients and professionals) experiences with participatory medicine

5. Reviews. Critical summaries of scientific literature from adjacent fields and disciplines, and of products, web sites, and events

6. Media & Journal Watch. Brief commentaries on (and links to) recently published journal articles, blog posts, and news reports

Editorial Board Members

Mohammad Al-Ubaydli, MD, Patients Know Best (PHRs)

Jack Barrette, WEGO Health

Mike Battaglia, Health care consultant; formerly Intuit and Humana

Jeffrey Bland, PhD, Metagenics and The Institute for Functional Medicine

Kate Christensen, MD, Kaiser Permanente

Susan Edgman-Levitan, PA, Stoeckle Center for Primary Care Innovation, MGH

Ted Eytan, MD, MPH, Permanente Federation

Patty Feist, Pediatric Oncology Resource Center

Rushika Fernandoupulle, MD, MPP, Renaissance Health

Peter Frishauf, Crossix Solutions, Medpage Today, Omnimedix Institute

Gilles Frydman, ACOR

Alan Greene, MD, Dr.Greene.com, Standford Univ.

Sarah Greene, Keas Inc.

Dan Hoch, MD, MGH & Harvard Medical School; Braintalk.org

Alejandro Jadad, MD, Centre for Global eHealth Innovation, Univ. Toronto

Greg Juhn, A.D.A.M. Inc.

Gary Kreps, PhD, Health Communications, George Mason University

Joseph Kvedar, MD, Center for Connected Health, Partners HealthCare, Harvard Medical School

David Lansky, PhD, Pacific Business Group on Health

Jon Lebkowksy, Social Web Stragegies; Weblogksy blog

Kate Lorig, RN, DRPH, Stanford Univ. School of Medicine and Stanford Patient Education Research Center

Amy Marcus, Wall Street Journal

Faith McLellan, PhD, World Health Organization

Carol Peckham, Medscape

Carlos Rizo, MD, Health Strategy Innovation Cell and eHealth in Motion

David Rosenthal, MD, Brigham & Womens Hospital (Resident)

Andrew Schorr, Patient Power radio program and webcasts

Josh Seidman, PhD, Information Therapy

Clay Shirky, Interactive Telecommunications, New York University

Amy Tenderich, DiabetesMine.com

Trisha Torrey, DiagKNOWsis, About.com, Allexperts.com

Roni Zeiger, MD, Google Health

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14 Responses to Journal of Participatory Medicine

  1. Gunther Eysenbach says:

    For the record: The Journal of Medical Internet Research (http://www.jmir.org) has published and continues to publish pertinent articles in this field since 10 years. I think it is sad that the protagonists of the journal of participatory medicine chose to create a competing journal instead of collaborating with existing initiatives.

  2. mobrien says:

    There is a great example of social self care at patientslikeme.com where a large group of ALS patients ran a patient-directed clinical trial to determine efficacy of lithium in treating their disease. A peer reviewed journal is much needed to make sure these efforts become legitimate data in decision making.

  3. Kevin Kelly says:

    @Gunther: While your journal has indeed published pertinent articles on participatory medicine, and deserves credit for that, your focus in on online and there is much research in participation that is not online. Also much online medicine is not coming from participatory patients; it’s flowing downstream from the usual doctor/hospital direction. In other words, online does not equal patient participation, although it can (and should!).

  4. Jon Lebkowsky says:

    Kevin, those are good points.
    As one of the JPM founders, I have to say I can’t imagine that we would be competing with JMIR. There’s certainly room for both. Participatory medicine is a rich field for exploration, research and discovery – in fact, two journals probably aren’t enough.

  5. Patrice says:

    Just fell into this thread, and am very interested in reading about the social and psychological aspects of participatory medicine in patient’s. I see this as a potentially wonderful adjunct to psychology, because it seems jpm advocates self help. When patients take a proactive role in their own health, beit preventive or in treatment, a sense of autonomy and control returns or is discovered. Having control over one’s health is a well documented factor associated with reversing depression, an emotional disruption directly related to a sense of helplessness. I see a lot of health psychology related here. Look forward to reading with interest!
    Patrice Campion
    M.S.Psychological Research (2010)
    Ireland

  6. Andy Mikulak says:

    JMIR is about “on” the internet. JPM is about “by” the patient. The internet is just an enabler to participatory medicine (though a very necessary and darn good one)! I look forward to reading (and participating in) this exciting new venture!

  7. Marleen Bilas says:

    Please could you help me? Feed Burner has not recognised my application even though I have twice to subscribe.
    Thanks for your help
    Marleen

  8. Kevin Kelly says:

    @Marleen: What are you trying to subscribe to?

  9. Rick says:

    Does the journal have a web site?

  10. anita stern says:

    I wonder if you’re able to broaden the title of the journal to capture health care vs. limiting to medicine?
    Have you considered patients as potential editorial board members?

  11. anita stern says:

    I wonder if you’re able to broaden the title of the journal to capture health care vs. limiting to medicine?
    Have you considered patients as potential editorial board members?

  12. Vi Ransel says:

    How does one publish atricles on your website? What are the writers’s guidelines?

  13. Gilles Frydman says:

    The Journal of Participatory Medicine launched on October 22 with a special introductory issue. You can read all the articles for free.
    Just go to http://jopm.org.
    Our mission is to transform the culture of medicine to be more participatory.
    The special introductory issue is a collection of essays that will serve as the ‘launch pad’ from which the journal will grow. We invite you to participate as we create a robust journal to empower and connect patients, caregivers, and health professionals.
    Thank You!

  14. wonder if you’re able to broaden the title of the journal to capture health care vs. limiting to medicine?
    Have you considered patients as potential editorial board members?

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