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

The following is a guest post from Arna Ionescu, who is Domain Director, Connected Health for a leading innovation design firm, IDEO, an IxAction Alliance member. You can also find more background on the IxCenter’s increasing emphasis on Ix innovation design.

Thank you to the IxAction Alliance members who participated in our interactive webinar last Tuesday. During the webinar we used IDEO’s design approach to tackle the challenge of providing effective Information Therapy (Ix) to a fictional character named Vernon, who has minimal resources and was recently diagnosed with high blood pressure.

To inspire solutions for this challenge, members of the IxAction Alliance submitted images of unexpected learning moments in their daily lives. These images spanned from public service billboards to Snapple caps and restaurant placemats. In advance of the webinar, the IDEO team synthesized the images into brainstorm questions.

The webinar attendees voted and selected the brainstorm question, “How Might We leverage curiosity to prompt Vernon to engage with Ix?” Following IDEO’s brainstorm rules, attendees submitted ideas using the webinar software.

More than 30 ideas were generated in the ten minute brainstorm, and a second vote allowed the attendees to select which idea to pursue further. Attendees selected the “High Blood Pressure Club.” We discussed “$10, 10 minute prototypes” – an approach that allows us to try out fast and cheap experiments to gain insight before costly design and implementation efforts.

Two members of the Alliance community volunteered to explore the High Blood Pressure Club further. In subsequent discussions, we refined the idea to an online forum that people join when diagnosed with high blood pressure. We hypothesized that members would compete to reach emeritus status. We further hypothesized that people might feel more supported if they were paired with a buddy in the club, making the competition a team sport.

As we refined the idea, a number of questions came up, including: How do we reward people? Is emeritus status enough of a motivation to participate actively? Should buddy pairs be random or selected by club members? What’s the best recruiting mechanism for new members?

We decided to explore our questions around emeritus status using a $10, 10 minute prototype. Because feedback in healthcare takes a long time, we identified an analogous context in which to run the test. Instead of focusing on lowering blood pressure, we would focus on lowering gas usage when driving.

Next week we will start a two-week experiment about our “Gas Guzzler Club.” Three participants will measure a week-long baseline of their gas usage. At the beginning of the second week, we will “induct” our participants into the Gas Guzzler Club, letting them know they can achieve emeritus status, and provide a short tutorial on how to use less gas. Additionally, we will send daily tips in a medium of their choice (text, email, or voice). At the end of the second week the most successful participant will be granted emeritus status. We will then interview each participant about their experience to gain insight into how well we motivated them.

This plan will take relatively little effort yet should reveal a lot well before we invest significant time and money. We will follow up with another post next week to fill you in on the start of our experiment!

Following up on my post yesterday in which I discussed the similarities and differences between newspaper and health care content commodification, I was steered to a great piece of video history by a tweet from Dan Cohen, Director of Center for History and New Media at George Mason University.

This YouTube video is a local news segment from a San Francisco TV station in 1981 about this wild experiment of 8 newspapers to deliver the content of their daily publications to home computers.

Although the story is delivered with complete seriousness, it was hard not to laugh out loud. I’m not sure which is the funniest piece of the story:

• The newscaster seemingly uncomfortable with the word “computer.”
• The caption under a consumer that reads, “Home Computer Owner.”
• It takes 2 hours to download all the contents (text only) of the daily newspaper.
• The San Francisco Examiner staffer saying that they’re trying to learn…and perhaps unintentionally foreshadowing the direction of the online news industry: “We’re not in it to make money. We’re probably not going to lose a lot, but…”

Some good lessons here on what technology predictions from less then 3 decades ago look like in retrospect.

For months, I’ve struggled with:

• Do I really have time in my life for one more expression of Ix personality via a new technology?
• Can I say anything of value in 140 characters or less?
• Is the Twittersphere providing any value to the world?
• Will tweeting distract or promote the advancement of Ix science or practice?

Just as my questions to start blogging couldn’t be answered by agonizing over the decision, I finally decided that the only way to find out was to start tweeting myself (jjseidman is my moniker for those who are interested).

During the IxCenter Board meeting, where some of the Board members — notably James Hereford and Alan Greene –  discussed how they had tweeted about/during the meeting, I started to think that it was time to give it a try.

With the first-ever “Health 2. 0 Meets Ix” conference just hours away, there’s no better time to try it out than now.

I generally don’t use this blog to share personal reflections, but since this year’s Boston Marathon happens to coincide with other Boston events — the IxCenter Board meeting and the first-ever Health 2.0 Meets Ix conference – I figured I could get away with it. I promise this marathon race report will be just a fraction of my typical step-by-step account.

To paraphrase Mark Twain, “The rumors about my demise have been greatly exaggerated.” I’ll admit…most of these rumors probably were started by me. For months, I’ve been complaining to those who would listen to me (mostly my wife) about my body just not responding to my workouts ever since I turned 40 last fall.

In any case, I lined up in Hopkinton for the start, knowing that my best marathoning days  were long behind me, and feeling that my training this winter had been inconsistent. But the weather was cool — even though I’d be facing a 15 mph headwind most of the way.

I had a little trouble holding back but eventually settled in and then got into a groove. I was trying to keep each mile between 7:10 and 7:15 to assure a sub-3:10 finish — a little hard on course like Boston with its rolling hills. The miles started clicking by and — just when I started to feel fatigue after the first 12 miles — the uplifting pass by Wellesley College was more rejuvenating than ever (just for the record, I didn’t answer any of the hundreds of signs offering “free kisses”).

I hit the halfway point in 1:33 flat. I began to wonder if I had pushed it a little too hard to early, but I kept the pace up through Wellesley and geared up for the four hills of Newton (miles 17-21). The first hill is the long, lonely one; it passes over the highway so the crowds are thin and it’s exposed to the elements — which, today, meant the cruel wind. I pushed over the summit and past the hospital to make the famous turn at the Newton firehouse and up hill #2, a bit shorter, but a bit steeper. My calves and quads began to complain here, but I fought the instinct to give in and continued to pass dozens of runner on the climb.

Mile 19 offers a brief respite, and I recouped, picked up the pace and geared up for the big push. By the 20th mile, I was beginning to sense that I had nailed my hydration and fueling needs because my body actually responded to the third Newton hill. That set me up for the notorious Heartbreak Hill — a half-mile stretch that typically confronts the runner just as he or she is hitting the proverbial wall. In this case, the wind was whipping in my face at this point, but I pushed through, crested Heartbreak and hit the mile marker in 7:23 (it would turn out to be my slowest mile of the day).

As I passed Boston College, I took advantage of gravity and ran 22 in 6:58. I kept hammering past my family just shy of Mile 23, where I grew up and continued to run strong through the rest of Brookline. When I reached the “Mile to Go” sign, I knew I could break 3:07 with a 7:10 final mile. I summoned whatever I had left down Comm Ave, up Hereford, and down the final long stretch on Boylston to hit the finish in 3:06:52 to record a second half just 52 seconds slower than the first.

It was my 13 Boston (12th consecutive) but my first as a “Master.” It was a good way to start the next phase of my running life.

The Congressional Budget Office (CBO) announced today that — based on new research — it has scored a novel health care reform proposal as producing significant cost savings to the federal government while providing universal coverage to all Americans.

New CBO estimates suggest that the plan will provide more than one trillion dollars of savings relative to existing federal government projections over the next 10 years through lower expenditures in Medicare, Medicaid and other federal programs. The novel approach relies on a combination of payment reform and delivery system reform.

CBO relied on new empirical research that indicated that a series of delivery system changes were proven successful in dramatically reducing unnecessary tests, procedures, hospitalizations, and emergency room visits — in some instances by more than 30%. In addition, introduction of new technologies that facilitated more continuous communication between clinicians and patients reduced the need for in-person ambulatory encounters. CBO analysis indicates that the savings produced by these changes will provide substantially more savings than the cost of insuring the nearly 50 million Americans who currently lack coverage.

The delivery system changes rely on the integration of new technologies that facilitate the proactive delivery of tailored health content that promote two major improvements: effective behavior change for people with chronic conditions; and thorough informed and shared decision making related to high-cost tests and procedures. The former dramatically reduces the economic and health burdens of chronic diseases, and the latter substantially diminishes utilization of preference-sensitive care and the effects of supplier-induced demand. A key feature of this new delivery system is well designed primary care practices — often referred to as “patient-centered medical homes” — that facilitated 24/7 communication and prescription of Ix to ensure that patients had access to the information they need when they need it and in a way that they could use it.

April Fool’s Day! Ok, so CBO has not found adequate empirical analysis to support this analysis. Yet the logic of this care delivery model seems so obvious that maybe one day we will wake up and our alternate universe will be our reality. It is with this in mind that the Center for Information Therapy and Health 2.0, LLC have decided to hold “The Great Debates on the Next Generation of U.S. Health Care.” You don’t want to miss this event April 22-23 in Boston.

I have always been against HMO’s.  I didn’t want someone telling me that I had to choose a doctor within a certain group.  So when I started at the Center for Information Therapy and had to choose my health insurance and my former carrier United Healthcare wasn’t an option, but Kaiser was, I didn’t know what to do.  As I did my research, I found out that Kaiser had a “Flexible Choice” plan which meant that I could choose a doctor in or out of network.  Now that was a good compromise.  At that time, I began to feel really bad, stomach pains that wouldn’t stop and decided that I needed to see someone right away so I went to Kaiser and chose a primary care doctor that I didn’t know but who could see me the next day. 

I was very nervous but when I got there I was pleasantly surprised.  It was one of the best experiences I ever had.  Everything was in one building.   There was a computer in each exam room and after my doctor and I talked about my symptoms he began typing and entering all of my information in the system.  He then informed me of all the tests he wanted to run and why.  I didn’t have to go anywhere else for my tests and once the test results were in, I was sent an e-mail so I could go on-line and view my results right away.  When I left, he handed me a print out of everything we went over and the next steps.  I was amazed.  Who knew that this even existed?  After reviewing my tests he initially thought I had pancreatitis but later ruled that out.  After about 20 tests he still couldn’t tell me why I am in constant pain, sometimes not able to sleep and my stomach burns and still hurts every day. 

At that point he recommended a Gastro specialist outside of Kaiser.  When entered the exam room the doctor began discussing my symptoms and told me what he thought. He had reviewed my file and was able to see all of the tests that my primary care doctor had conducted and told me what he thought the next steps should be.  He had all of the information right there, I didn’t have to try to remember what had been done, we didn’t have to start from square one, it was refreshing and he was able to give me the Right Information at the right Time for me!  WOW, what a concept.  On Monday, I will go in and have an endoscopy.  They will look at my stomach to see if I have multiple ulcers take samples etc.  I am just ready to feel better.  In looking back at the experience as a whole,  I wonder how this would have played out at my former doctors office in North Carolina. They didn’t have a network like Kaiser.  I suspect this process would have been very frustrating without all of the information that I was provided after each visit and getting the results would have been another challenge. 

How do we integrate these kinds of systems with individual physicians that don’t have all of the resources like a Kaiser or Group Health?  Being sick is stressful enough, especially when you don’t know what is wrong, shouldn’t  Getting the Right Information at the right time in your moment of care be the norm and not the exception for all patients in the delivery care process?

In our world of the Internet, where “googling” medical information has become a commonplace exercise in the pursuit of personal knowledge, the old dynamic between patients and doctors seems to have shifted. For many consumers, the days of relying only on information prescribed by a doctor have given way to a new age of self advocacy in preparing for healthcare visits. Coming equipped with knowledge instead of just waiting for information seems to be a trend that is here to stay. But some doctors seem to find this more of a hassle then help. The new phenomena of “medical googlers”, is defined as  patients who conduct medical research prior to seeking the expertise of a health care provider. As the title “A Doctors Disdain for Medical Googlers” demonstrates, some health care providers, particularly the doctor noted in this article, give a negative connotation to this type of health patient.

The doctor’s perspective was interesting and while he may have come off looking like the “bad guy”, one can understand that in this particular experience he was dealing with a patient that was overzealous to a degree bordering on disrespect. But to discuss this new phenomenon in a broader context, we must see the larger implications. Yes, it may be difficult for a doctor to have a patient walk into their office having read so much previous internet information that they distrust the content then provided to them by their doctor. But if health care providers were providing consumers with the necessary information in a comprehensive manner, if they were taking the necessary time and approach tailored to that individual patient, then this overwhelming dependence on Google may not exist at the same level. This is not to say that seeking information across mediums is a bad thing. Googling medical information is fine. The problem arises when looking up medical information online becomes a direct result of a distrust of and loss of faith in the doctor patient relationship.

Josh has been around since the inception of the Center for Information Therapy 7 years ago.  When I first joined the IxCenter this year, I heard that Josh never takes vacations.  I also heard that he never calls in sick.  His dedication to the IxCenter is unmatched. 

Josh bravely left us in charge of the IxCenter Blog for the next two weeks.  Who are we?  We are Joie Hawkins, Emily Jacobs, and myself (Cindy Throop).  We all work here at the IxCenter.  We will each be contributing to the Blog over the next two weeks.  We will be sharing interesting bits of research, our thoughts on Ix, and last but not least, consumer perspectives.  After all, we are all consumers. 

 Thanks for reading and join us in wishing Josh an enjoyable and well-deserved vacation!

Last week, I had a brilliant idea: have my son blog about his first official experience with information therapy.  He had just received his first after-visit summary.  He’s bright and creative, so I was sure he would come up with something good.  As it turns out, he didn’t have much to say about it.  I proceeded to show him his newly and barely populated PHR (personal health record).  He was still unimpressed.  Now might be a good time to mention I bribed him with Internet access.  “After you write about information therapy, you can play on the Internet.”  He was in a hurry to get this over with so he could do (apparently more interesting) things on the Internet than look at a lousy PHR.

This is where I jump in and tell him that when I was his age, I had to wait for 2 to 3 hours in the waiting room to see my doctor (you know, the “When I was a kid, I had to walk uphill in the snow to school…both ways!” story).  I only went to the doctor when I was sick.  The doctor would promptly produce a small white piece of paper (an Rx), and that was the end of my visit.  I hated going to the doctor and had never heard of prevention and would never expect the doctor to explain what he/she thought was wrong with me.  I would have never thought he/she would discuss my treatment options with me or ask me, “Would I like to try medication for it?” or “Would I like to try some preventive approaches to avoid this happening again in the future?”.

Fast forward 25 years and I have a kid who does not appreciate how far the health care system has come.  I really can’t blame him, though.  Information Therapy is kind of like, “Duh!”  It’s a no-brainer.  It’s an “invention” that is so overdue that when it finally appears you ask yourself, “How have I lived without this for all these years?”.

“Mom, I wrote the blog.  Can I go play on the Internet now?”