Tag Archives: participatory medicine

What We Are Reading

Enjoy this week’s list!

Flipping Primary Health Care: A Personal Story by Kedar S. Mate and Gilbert Salinas. We’re leading off this week with a fascinating case study that describes what happened when one patient, Gilbert Salinas, “flipped the clinic.” After deciding to accept fellowship that would move him from California to Cambridge, MA he worked with his care team to take control of many of the tasks typically performed in the clinic.

Most importantly, I feel happier and healthier, and I am amazed that I have been able to accomplish my goal of being healthy during this year away from my providers. It has transformed my sense of what is possible and has encouraged me to take further ownership of my health.

A Case for Autonomy & The End of Participatory Medicine by Hugo Campos. I’m constantly in awe of our friend and QS community member, Hugo Campos. As a leader in the fight for access to personal data (see this great NPR piece from 2012) he’s been an inspiration for our own ongoing Access Matters work. In this post, Hugo makes the case for focusing less of patient participation in the medical system, and re-orienting towards improving patient autonomy and self-determination.

Health Data Outside the Doctor’s Office by Jon White, Karen DeSalvo, and Michael Painter. In this short post, the smart folks at RWJF introduce the new JASON group report, Data for Individual Health, which

“[…] lays out recommendations for an infrastructure that could not only achieve interoperability among electronic health records (EHRs), but could also integrate data from all walks of life—including data from personal health devices, patient collaborative networks, social media, environmental and demographic data and genomic and other “omics” data.”

A Systematic Review of Barriers to Data Sharing in Public Health by Willem van Panhuis and colleagues. In this review article, the authors outline twenty specific barriers standing in the way of sharing data that could improve global public health programs. They include numerous examples of the technical, motivational, economic, political, legal, and ethical barriers that prevent more sharing across public health systems.

#WeAreNotWaiting at the Fall 2014 D-Data ExChange: The Stars Are Aligning by Mike H. QS Labs was unfortunately unable to attend the Fall 2014 D-Data ExChange, but were excited to read this great summary of the event.

The Quantified Self and Humanities Best Friend by Kevin P. Kevin found out that he could track his dog, Lilo, along with himself when he went for walks and runs. In this short post he outlines his process, and the barriers he ran into, for collecting data from his different devices to show his progress on a recent 5k walk.

Follow-up study: on the working time budget of a university teacher. 45 years self-observation pdf hereby Dimitar Todorovsky. Dimitar is a recently retired researcher and professor of Chemistry and Pharmacy at the University of Sofia in Bulgaria. In this journal article he outlines his findings from tracking his time every day over his 45-year career. Most striking to me is that he averaged 10hr of work per calendar day for the entire 45-year period.

Heart Rate (bpm) during marriage proposal by reddit user sesipikai. Going to Rome to surprise your fiancé to be? Why not record your excitement and nervousness by wearing a heart rate chest strap!

To Big to Fail by Nicholas Felton. In this great video presentation Nicholas Felton describes the process behind building the latest in his series of Annual Reports. You can also check out the full 2013 Annual Report here.

From the Forum
Counterintuitive HRV Measurements
Active, Athletic Folks With Asthma Tracking Their Performance
Mobile Health and Fitness Apps Privacy Study
OP Innovations Sensors
Timer/logger/tracker–what kind of gadget am I looking for?

Posted in What We're Reading | Tagged , , , , , , | Leave a comment

Quantified Self in Medical Practice

Posted in Videos | Tagged , , , | Leave a comment

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.


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

Posted in News and Pointers | Tagged , , | 15 Comments