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 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, 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

Milt Freudenheim of The New York Times wrote an article about the new partnership between Zagat and WellPoint to publish consumer ratings of physicians. Not surprisingly, it included many complaints from doctors about the inadequacy of physician performance measurement.

I haven’t had the opportunity to spend much time with the Zagat-WellPoint consumer ratings (primarily because they aren’t making them publicly available), so I can’t go into detail on their methodological approach, but I give them credit for four things. First, we need to push the envelope on performance measurement, so more experimentation is generally a good thing.

Second, existing physician measurement approaches have been inadequate, particularly as the unit of analysis gets smaller and smaller (e.g., measuring individual doctor performance). By approaching the question of “what is a good doctor?” from multiple angles, we’re more likely to get a better answer.

Third, one of those angles definitely should be, “what do patients think of their care experience with their doctors?” Asking consumers is a good way to answer that question.

Fourth, one of the frustrations with those of us who have spent time developing performance measures is that consumers rarely use them. In contrast, a trusted consumer brand like Zagat or Consumer Reports might just get traction with consumers.

With respect to #2, clinicians have frequently (and often correctly) pointed out the shortcomings of most existing evaluations of their clinical performance. Particularly as you try to assess individual clinicians, the problems of small numbers and risk adjustment make it difficult to measure robustly, reliably and validly.

Given those challenges, it would seem to make sense for third parties to evaluate them on things that are easier to measure and also go to the heart of the clinician-patient relationship and the goals of participatory medicine — namely trust and communication. That’s at least what the NYT article claims Zagat and WellPoint are measuring.

While the clinicians quoted in the article are correct that these criteria are somewhat subjective, if we can get large enough and random enough consumer samples, subjectivity does not render the measurement invalid.

Although it’s unlikely that a new service like this is either yet (big enough or random enough), that doesn’t mean it can’t get there. Hopefully, before long, Zagat and WellPoint will open their black box and let clinicians and the rest of us in to look at their methodology so that their claims can be verified.

At that point, we might have a useful new tool for assessing one important domain of clinician performance, and can pair that with other ways of examining it that better evaluate their clinical competencies. The more ways we have for answering the question, “Is this a good doctor?” the more likely we are to get a reliable, valid and robust answer.

A good study appeared in the October 30, 2008 New England Journal of Medicine related to the first public release of HCAHPS data. HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) is a “standardized survey of the experiences of adult inpatients with hospital care and services.” This study is based on July 2006-June 2007 voluntary reporting, but Medicare (CMS) is requiring hospital reporting going forward.

Overall experience data are not surprising: Reasonably satisfied but plenty of room for improvement. Although 89% of patients rated their overall experience 7 or better (10 being the best), only 63% rated it a 9 or 10.

What was most informative was where the data suggested were the greatest areas for improvement:

• Provision of clear discharge instructions
• Communication about medications
• Nursing care
• Pain control

I could make an argument that good information therapy (Ix) that was integrated into systems of care would improve performance in all four of these areas. Clearly, though, the first two areas for improvement are obvious targets for Ix interventions.

Hospitals that want to score better in how they provide discharge instructions and communicate about medications should be working hard now to embed Ix strategies into their core care delivery practices. With public reporting of HCAHPS data just around the corner, this could become an important strategic initiative for hospitals in competitive markets.

Sometimes when I talk about information therapy (Ix), I get a lot of head-nodding, but people still don’t fully understand what Ix really looks like in practice.

That’s why one of the most illuminating sessions at the 7th Annual Ix Conference next week (June 12-13) at the Newseum in Washington, DC will be, “Ix Killer Apps: Patient-Centered HIT in the Real World.

Specific Ix applications to be discussed include after-visit summaries, pre-visit preparation, multimedia decision aids, medication reconciliation, Ix for lab results, and use of health risk assessments for delivering more tailored information prescriptions. Both electronic and paper solutions will be addressed.

We’ll hear from innovative leaders from different kinds of practice settings and opposite sides of the country.

• James Hereford, Executive Vice President, Strategic Services & Quality, Group Health Cooperative
• Bill Kormos, MD, Education Director, John D. Stoeckle Center for Primary Care Innovation, Massachusetts General Hospital

After I provide a five-minute Ix overview, these leading innovators will demonstrate how Ix has been implemented in their disparate delivery settings. They will discuss the strategic reasons for pursuing Ix initiatives, issues involved in implementation, and their impact on care and efficiency.

If practices can implement these tools efficiently, they really will have nailed some “killer apps” by providing tools that really make a difference in the lives of their patients. Join us next week to figure out how to make this happen.

Certainly one of the best ways we have to assess patient-centered care is to ask consumers about their own experiences via scientific surveys. As I noted last week about Medicare publicly releasing HCAHPS data on patient experiences with hospital care, health care’s powers that be are emphasizing patient-reported data more than ever.

URAC has just released for public comment a new case management patient satisfaction tool, which is an important step forward in driving a patient-centered approach to delivering those services. Much of the tool is good.

Question #7 could be strengthened by drawing out more specific input from patients about the kind of information that helps people manage their care. It asks patients to rate agreement with the statement, “My Nurse/Case Manager provided verbal and/or written information that helped me reach my goals.”

We should have an expectation that case managers employ more than just live, oral communication to help people reach their goals. For that reason, the “or” is inadequate.

In some cases, however, “written” may not be sufficient either, given that it implies text. For some people, graphics, video, or audio may be more effective media. Perhaps most importantly, it should be information that the patient can save and refer to at his or her convenience.

Although the wording may still need work, better language to address patient-centered communication needs would be, “My Nurse/Case Manager provided information in a form that I could understand, access when I needed it, and helped me reach my goals.”

One thing that’s clear from a new study by Jack Fowler in this week’s JAMA is that hospital patients’ experience with care is unrelated to health care expenditures. Given how much we spend on health care in the US, we ought to figure out how to make it positively affect consumers’ experiences.

At our 7th Annual Ix Conference, “Next-Generation Patient-Centered Care,” we will address patient-centered communication and the incentives to encourage it from multiple angles. You can still register for this unique event in Washington, DC June 12-13.