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 IxCenter, IDEO and the California HealthCare Foundation (CHCF) have just published a new report, “Innovating with Information Therapy (Ix): Prompting Transformational Change with Safety-Net Populations.” The report represents our findings and learnings from a collaborative project between the IxCenter and IDEO with funding and guidance from CHCF, as well as input from several experts and physicians who serve safety-net populations.

The project had two primary goals:

1. Identify and illustrate new information delivery mechanisms that prompt patients to improve their self-care behaviors.
2. Help safety-net organizations understand how prototyping methodologies can increase the efficiency of implementing new ideas.

One of the first things that we did was to learn directly from consumers themselves through ethnographic observation and structured consumer interviews. From there, we reconvened as a group to do storytelling and share insights we gained from consumers. The process then shifted to a group exercise of generating themes and how-might-we statements.

The second day began with intense brainstorming, followed rapid prototyping in which we develop what IDEO calls “10-dollar, 10-minute” prototypes. The idea was to actually develop something concrete and then we presented these prototypes to three people who live with chronic conditions. Before building out more fully, it’s critically important to get direct feedback from the target audience for your innovations.

Far more detail about what we learned and what we developed can be found in the report. We look forward to lots of feedback on our findings, and suggestions for where we might take this work next.

Despite the personalized attention I get in our pediatrician’s office and their general responsiveness to calls — both to their own nurse call line and during on-call hours — I find certain aspects of this 20th-century practice frustrating. The most important ongoing issue relates (not surprisingly) to the one chronic condition we have to manage: The intermittent asthma of my youngest son, 5-year-old Ryan.

Back in April, at the height of Washington’s spring allergy season, I wrote about my frustration in feeling unprepared to help Ryan in crisis. After another asthma flare-up two weeks ago when Ryan had a mild fever, I decided that I needed to take a more active caregiver role. It was time to become an “im-patient consumer.”

The first need to address was the idea I had back in April — empowering Ryan and his family to feel confident in using an inhaler and spacer when he needs albuterol (rescue medication) immediately.

Step 1: I ordered a Flip Video cam via Amazon.

Step 2: I told Ryan that we were going to the pediatric allergist’s office and I’d videotape the doctor showing Ryan how to use the inhaler. To which Ryan responded with high face lighting up, “Cool!”

Step 3: At the outset of the visit, I explained the issue to our doctor and I instructed him that I would videotape him demonstrating use of the inhaler and spacer to Ryan.

Step 4: I filmed two approximately 30-second video segments — first, facing the doctor and second, facing Ryan.

Step 5: When I got home, using FlipShare, I quickly emailed the videos to my wife and Ryan’s grandparents with copy to me (the people most likely to be present when Ryan needed help with his asthma).

Step 6: I sat down with Ryan to watch the videos. I don’t know about your 5-year-olds, but with mine, just about the only thing cooler than playing on Daddy’s computer is watching video of himself on Daddy’s computer.

Step 7: We’ll continue to watch and practice until he (and his parents) feel comfortable that he can use the inhaler well enough to get the medicine he needs to help him breathe more comfortably when he’s wheezing and coughing. Ryan may not yet be able to define “self-efficacy” but we’ll all know it when we see it.

Result: I have an empowered 5-year-old at home now.

Among the many things that made the IxCenter’s Patient-Centered HIT Initiative great was listening in to what patients were saying about their care. We can learn an enormous amount from listening to consumers about their care experiences.

IxAction Alliance member, MedEncentive, has had great success in controlling costs and improving the experience of care by using clinician and consumer incentives for prescribing information (doctors) and filling Ix prescriptions (patients). One of the things that they do in collecting their data is invite consumers to share their comments about MedEncentive’s information therapy (Ix) program.

When you put together a string of these comments, you begin to get a picture of what Ix can do to improve consumer engagement, enhance the clinician-patient relationship, and launch an environment of participatory medicine.

Since we know that 40% to 80% of everything that a doctor says to a patient is forgotten by the time he or she returns home…

“I am thrilled to be able to get additional information and even to print it out to read again later.”

“I have learned things from reading articles that are provided. My doctor tells me numerous things but it is always nice to be able to research more at my own leisure.”

“Program provides more detailed information than a patient usually gets in the doctor’s office. Information often answers questions that come to mind after the office visit.”

“This information that is provided helps me understand what it is that I actually have or need to do. My Dr may tell me at the time of my seeing her, however the information doesn’t always stick in my head if I am not feeling well. This reiterates the information that my Dr had told me at the time of my appointment.”

Consumers typically appreciate navigation to resources that are targeted to their own situation…

“This is very helpful. It gives more information that is specific to the condition without having to research it on line yourself. Thanks.”

Ix can elevate the level of dialog between clinician and patient so that they can make better use of their limited time together…

“I think this program is very helpful. It allows me to understand better the things that my doctor and I talk about.”

“the articles are informative…it gives me information that I may not get in a 15-20 minute doctor appointment”

“I can see that this program is beneficial to me, by reading I educate myself a lot, there is some stuff that doctor don’t go deeply because of time, I guess, and by reading all this info, it is like it makes the picture more clear. Thank you for doing this!”

“Good means of informing patients in a more in-depth manner than is often possible in a doc’s office”

“I feel that it gives more comprehensive information than what I received in the Doctor’s office.”

That reinforcing information facilitates true participatory medicine…

“I am able to ask my doctor questions because of the knowledge I get from information therapy.”

Ix provides necessary reinforcement to stimulate behavior change…

“In our fast-paced world we often need to hear the same thing several times from several sources! I appreciate being reminded of steps that can/should enhance my quality of life–healthy eating, regular exercise, regular medical check-ups, etc. Most of us KNOW these things, but often overlook them until it’s too late!”

And, ultimately, consumers feel more prepared for what lies ahead for them…

“I feel very strongly about the benefits of information therapy. I learn a lot from reading the information…. Now I know more of what to expect if my condition worsens.”

Finally, Ix can help change the fundamental orientation of the delivery system…

“Information therapy has been very beneficial to me. It confirms the preventative therapies that my doctor recommends to me. This is a plus to my taking good care of myself and not all the time relying on medicine alone. I like this focus on wellness - to me it is what healthcare is about and not “sick-care” where we only do things when we are already sick. Thank you for this brilliant innovation. I wish the whole country will spouse your Wellness Program.”

Sometimes our work life and home life collide…or at least it would be good if they did…

The Center for Information Therapy (IxCenter) has just submitted a grant proposal to NIH — part of the stimulus bill funding for comparative effectiveness research included requests for “information prescriptions” evaluations — in collaboration with Ix evangelist Kate Burke (an emergency physician) and some very progressive physical therapy (PT) practices in Massachusetts. The basic premise — and any athlete that has done PT to rehabilitate an orthopedic injury knows — is that physical therapists do great work, but ongoing improvement in orthopedic function often comes from the home exercise that the patient does on his/her own. And, equally importantly, it can be really hard to recreate those exercises at home based on oral instructions received or even text or a single picture.

The main Ix intervention in the proposal involves using Flip Video information prescriptions. The physical therapist uses the simple Flip camera to record that patient doing the PT exercise in the clinic and emails the video to the patient that day. I have grown fond of saying about this project: If a picture is worth a thousand words, a video is worth 10,000.

So that brings me home…  We’ve been monitoring my 5-year-old son, Ryan’s, asthma. Last spring (exactly this week), the spring pollen season triggered a reasonably severe asthmatic reaction (see Ix Gets Personal (Again)). He has since had one other bad asthmatic event, and a few consultations and allergy testing with a pediatric allergist. We developed a game plan for trying to prevent another April flare-up.

In many ways, we think our pediatric practice is great, but there are some things that it does not do well. For example, there’s no written (not to mention electronic) asthma action plan, so my wife and I sometimes have slightly different expectations of next steps.

In this case, most importantly, neither of us is a skilled practitioner in the use of an asthma inhaler. As a four-year-old, Ryan used a nebulizer (a clunky device, but one which is fairly straightforward to use), but the allergist trained us once (more than two months ago) in use of the asthma inhaler with spacer. We have no information beyond the package insert. I honestly don’t have a good recollection of the exact steps involved and — when I asked my wife how she did it last week when I was out of town — she confessed to not being too sure herself. And, little Ryan — despite his many talents — isn’t quite ready to teach his parents what to do.

Ryan’s breathing was strained this evening, and we eventually returned to the nebulizer to deliver his albuterol (rescue medication), but it’s not a very good solution. All I could think about was how perfect it would be if my pediatric allergist (or the medical assistant in his office) could have videotaped when he walked us through it step by step a couple of months ago. If he had then sent us this video information prescription via email, I’d be empowered to help my son manage his asthma effectively and efficiently.

It seems so easy, yet so far away…

Here are some top-level reflections from the second day of the first-ever Health 2.0 Meets Ix Conference (see here for Day 1 thoughts as well)…

The online output from the conference demonstrates how fast the online user-generated world has changed. Matthew Holt and I met less than four years ago when he live-blogged the 2005 Ix Conference on The Health Care Blog. The concept of live-blogging our event seemed like a complete novelty at the time. In contrast, there were more than 100 different unique twitterers at our conference this year, and (according to Enoch Choi’s rough estimate) they generated more than 3,000 tweets.

Susannah Fox reported new Pew Internet & American Life Project data reinforcing that the average consumer’s first place to go for health information is their clinicians. Consumers rely more on professionals in health care than any other industry. It’s fascinating in the context of our lively discussion yesterday about what the concept of “expert” means in a field as complex as health care. The fact is that there’s so much that we don’t know—which is reminiscent of Einstein’s comment late in his life that he knew less than 1% of what there is to know about physics.

Thanks to Neil Calman for making sure that we not only focus on cost and quality, but just as importantly on equality. I couldn’t agree more. And more to the point for all of us in this space: As we evolve the Ix and Health 2.0 fields, we must ensure that the answers we come up with meet the needs of everyone in our diverse population. Otherwise, any gains in quality we achieve will increase the health and health care disparities that already exist.

Everything we do to reform the delivery system needs to start with the consumer. We can’t build patient-centered care delivery if we don’t let the consumer guide us to what will make it easier for them to live healthier lives. We can learn from consumers in several ways, each of which offers different information:

• Representative surveys of the population—allow us to understand the prevalence of various consumer behaviors
• Structured one-on-one interviews – provide a vehicle for a deep exploration of consumers’ perspectives on their health needs and desires
• Focus groups – similar to structured interviews, but introduce a group dynamic to understanding consumer perspectives
• Online communities – Teach us about what e-patients do all the time.
• Observations of consumers in their normal daily living and in their encounters of the delivery system – provide a window into what it’s exactly like to live in someone else’s shoes

Paul Wallace (who, in the mid-1990s, was still a practicing oncologist) shared his own story from one of his ovarian cancer patients that shaped much of what he does now. After demonstrating that she knew more about her specific condition than he did, she told him, “Don’t tell me what to do; tell me what it means for me.”

Danny Sands described how health care is a participatory sport, not a spectator sport. I couldn’t agree more, which I expressed in my post, “Baseball and Health Care: Only One is a Spectator Sport.”

Although no doubt some divergence of opinion existed among the more than 500 people with us for the last day and a half, I repeatedly heard from the stage, the audience and in the hallways a general consensus that Ix and Health 2.0 have far more synergies than tensions. Matthew, Indu and I clearly agree. But these two movements approach the patient-centered orientation of care from different perspectives. The exploration taught us all a lot about what we need to do to drive a reformed health care delivery system.

The following is a guest post from Rushika Fernandopulle, MD, MPP, Co-Founder of Renaissance Health. This is part of a continuing series of blog entries cross-posted here, on The Health Care Blog, and the Health Affairs Blog, the conference’s Media Partner in advance of the first-ever “Health 2.0 Meets Information Therapy” Conference in Boston on April 22-23.

Rushika provides another physician perspective on the same question answered by John Halamka this week, “How do we build Health 2.0 into the delivery system?” Both Rushika and John will participate in a debate on this topic in Boston.

How Do We Build Health 2.0 into the Delivery System?

By Rushika Fernandopulle

I am an internist who has been working for the last 5 years to design, build, and test radically new models of delivering primary care to improve experience, outcomes, and affordability of care. I currently serve as Medical Director of one of our redesigned practices in Atlantic City, NJ.  Yesterday afternoon, Mr. Santos, a 53 year old Hispanic doorman at a local hotel, came in to see me quite visibly distraught. His prior primary care doctor had without asking him or discussing the issue checked a PSA (Prostate Specific Antigen) as part of his “routine” blood tests and the results were mildly positive (6.5). He was told, “Your screen for Prostate cancer was positive, you need to see a urologist right away to have it taken care of.” All he heard, of course, was “cancer” and “positive” in the same sentence. Before Mr. Santos had time to even form the first of the dozens of questions he had, the doctor had already strode out the door. Over the next few weeks, Mr. Santos went online to read about PSA and prostate cancer (which yielded over 6 million pages on Google), and started talking to his friends at work about the issue. What he surmised, quite correctly, is that the way forward for him was not at all clear, and that instead of finding answers he only had more (but better) questions. What really was his chance of having Prostate Cancer? If he did what really were the benefits of catching it so early? Were the risks of the biopsies worth this benefit? What were his other choices?

Mr. Santos’s prior PCP clearly operated under the old-school paternalistic doctor model; I, the doctor, will manage your health; just leave it up to me. While this works well for some patients in some situations, for many, including Mr. Santos in this case, it clearly does not. More of health care than we care to admit lies in the grey like the PSA issue here, and there is disagreement in the science, and even more importantly, patients’ values and goals make a real difference. Also, particularly for chronic conditions, even if we wanted to we as doctors cannot manage our patients’ health. At most a patient will spend a few elapsed hours a year with us, leaving over 8750 hours not in our offices, and this is when all the real decisions need to be made.

The Health 2.0 movement provides a radical alternative to this old model where the physician monopolizes information and decision-making. Here patients learn from each other, and help each other make the right decision for themselves. This has always happened to some extent around the water cooler and among friends discussing their health problems, but the web has allowed virtual such communities to form and conversations to occur, and magnify the potential of such interactions. This is what Mr Santos turned to after leaving his old PCP’s office. The problem is that medicine is very variable, and one patient’s experience may or may not apply to yours. Also there is no rigorous science filter among voices heard on the web or around the water cooler and many of the 6.1 million websites indexed by Google give misleading or even dangerous advice.

Information Therapy, at its best, is a way to steer a sensible middle course between these two extremes. It allows a patient to work with a doctor (or other trusted health professional) to learn from information sources and other patients, and then filter and process this information with the application of the best science available to best meet their own goals and values. A good, experienced clinician has seen many cases of the same thing, and can help a patient put their information they learn into perspective.

For our health care system to truly best meet the needs of our patients, it needs to combine all these approaches depending on the patient’s wishes and the particular situation. When one is having a massive MI (heart attack), one simply needs a great doctor to take charge and reopen the blocked artery. When one is contemplating dietary changes or creating an exercise regimen, then turning to communities of like-minded patients (framed broadly as Health 2.0) is an appropriate approach. However, most of healthcare lies between these extremes, and Information Therapy, where a trusted clinician helps guide the patient to the right information and mediates and puts into perspective the knowledge gained from communities, is likely the right choice for most.

This is what I did with Mr. Santos. We spent 30 minutes together discussing what he had learned, and perhaps more importantly meshed this with what his goals and values were in terms of his health. In the end we decided together to recheck his PSA in 6 months to see whether it was rising or falling, I pointed him to a number of other resources to learn more about his choices, and we would decide after this whether to proceed with a biopsy or not. This process may have taken longer than what his prior doctor did, but I believe clearly led to a better outcome for both the patient and the health care system as a whole. We all deserve no less.

In today’s Wall Street Journal, Laura Landro devotes her biweekly “The Informed Patient” column to profiling information therapy (Ix) initiatives. Landro describes the Center for Information Therapy (IxCenter) and Ix programs developed by IxAction Alliance members Kaiser Permanente, Group Health Cooperative, and Healthwise.

Landro highlights how the consumer-dissociated health information technology debate inside the Beltway has not focused on how HIT will actually benefit consumers, and how Ix initiatives provide real-world solutions for engaging consumers. Landro’s column begins, “If all the talk in Washington about using electronic medical records to cut health-care costs makes your eyes glaze over, it might help to consider the experience of Holly Jacobson.”

Jacobson is one of the 2.8 million Kaiser members taking advantage of the real-world Ix solutions that truly engage consumers in managing their own care and improving their lives. Landro quotes Jacobson, who says that Ix initiatives have led to “a significant shift in my ability to become more of an advocate for my own health care.”

Landro quotes Paul Wallace, Chair of the IxCenter Board of Directors, “Information therapy can help bridge the transition from doctors doing things to and for people, to helping them become active participants in their own care.”

On Saturday, I had the pleasure of presenting to the CHCF Health Care Leadership Network/CCI MD Alumni Session Spring Meeting in San Francisco. The goal of the day was to explore Health 2.0, personal health records (PHRs), the patient-centered medical home, and what patient-centeredness really means.

The first panel –that addressed Health 2.0 and PHRs as tools for patient-centered care — was fabulous and balanced between patients and physicians. Amy Tenderich, creator of the patient blog, DiabetesMine, discussed her view of the four phases of coping with a new chronic illness.

1. Diagnosis/denial
2. Finding your way — figure out how you can be your own advocate and find answers on your own
3. Dive in & make a difference — I loved her term “dynamic education” — ongoing or continuous; the information you get and provide needs to match where you are as a patient and an advocate
4. The long haul — keeping motivated & educated over the long-term and the importance of social networks that offer three things: emotional support, information/education, and a platform for advocacy

Paul Tang, MD, MS, Chief Medical Information Officer at Palo Alto Medical Foundation (PAMF), explained that he sees his role (and that of health care providers more generally) as being a supporting cast for people like Tenderich & Parten (see below). PAMF created a “diabetes dashboard” for their patients that helps them connect the dots between their goals & concerns and physiologic data (e.g., blood pressure, LDL, HbA1c, etc.).

Tang pointed out that the patient’s goal may have nothing to do with the clinical goals; for example, one of his patients with diabetes said his goal was, “I want to live to 90.” Tang wants to use tools and contextualized information to link that emotional, personally meaningful goal to data, actions and behaviors that can help his patients achieve it. Part of that is developing processes for real-time data monitoring (e.g., via glucose monitoring fed directly into the dashboard) that triggers information therapy (Ix) to be delivered at a “teachable moment.”

Bonnie Parten is a patient advocate from PeaceHealth in Bellingham, Washington and instrumental person in the development of their PHR that they call a shared care plan (I’ve described the user-centered design approach they used before). As always, I sure learned a lot from listening to consumers.

The shared care plan facilitated communication among multiple providers — whether it was for her own care or any of her many family members using the tool. It’s important to note that patients use the shared care plan as both/either a secure online portal or convenient paper version that be carried around in one’s purse or wallet. That meant that some of Parten’s  family members (with serious conditions) felt comfortable traveling in a way they hadn’t previously for fear of being stuck away from their personal health information in a medical emergency.

Parten shared some other gems that only patients can teach us.

• Sometimes the shared care plan provides a little healthy competition among her family members to see who can get the best blood pressure control.
• The PHR allowed adult children to track their parents’ health from far away.
• In many cases, the accurate information in the shared care plan was critically important to Parten’s providers, whose EHRs often contained inaccurate or incomplete information.
• Presenting the shared care plan to her clinicians at the beginning of each encounter saves five minutes off of every visit (no wonder her doctors love her) and probably make the time spent together much productive.

But, Parten noted near the end, “the most important part was that I got to know my dad in a way I never knew him.”Marc Pierson, MD, was one of the physician leaders who made the shared care plan a reality at PeaceHealth, though he said that its success derived from the fact that he “shut up for two years and listened to patients like Bonnie.”

Pierson said that “listening to patients for two years completely changed my perspective on what being a doctor is all about. Specifically, he learned:

• The home is where: most caring occurs; most health care decisions are made (good or bad); and all habits are made (good or bad).
• Complex care requires coordination between numerous organizations and agencies.
• A new type of information “system” is needed (he doesn’t mean information technology, per se) that is centered on the patient and connected to anyone supporting the patient.

There was a terrific mid-afternoon panel (which I’ll try to provide more detail on in a future post), but the morning was a perfect set-up for me to discuss our evolving thinking on the consumers’ health home. I’ve described some of our thinking before. The basic issue is that we have (like the “Rent” song says) 525,600 minutes in a year and most of us can probably count how many of them are spent in a “medical home” (a traditional health care setting). As Pierson says, most of health needs are addressed, and behaviors are formed, in the home (or workplace, school, community, etc.). If we really want to help people manage their health, consistently choose healthy behaviors and ultimately live healthy lives, we better give them the information they need, where and when they need it.

 A picture is worth a thousand words, so here’s one way to think about it (click on image above to make it bigger) as it relates the Institute of Medicine’s first recommendation (from their landmark 2001 report on “Crossing the Quality Chasm”) for how 21st-century health care should be delivered — focused on continuous healing relationships. In other words, the health home has to start with the person at the center, give them some tools and then identify all the points in their lives with Ix can be meaningful to them.

Two days into my vacation, my 4 1/2-year-old wakes up with some wheezing. As I wrote in April, his first asthma event was a shock to us but because it came during one of the worst pollen seasons in recent memory this spring and he had no symptoms since that initial course of treatment, it had settled deep in the back of our minds.

We were a few hundred miles from home (where Ryan’s nebulizer was) and couldn’t figure out what to do, so we called our pediatrician on-call that Sunday morning. She advised us to seek care before beginning the second leg of our vacation journey (another 6-hour drive).

I spent a couple of hours reading books to Ryan at the nearest urgent-care clinic. The facility and clinicians were fine, but did not provide clear explanations and–although I did leave the office with a written after-visit summary–it was completely disconnected from my previous care experience.

I desperately wanted access to a personal health record (PHR)–some tool that would allow me to connect Ryan’s past asthma encounter with the current event. I knew that the medications were different, but was unclear as to the rationale.

• Why is he getting just one inhaled medication (the albuterol for short-term relief) instead of two (no Pulmicort or other inhaled corticosteroid for long-term control)?
• Why did they prescribe an oral steroid this time instead?
• How necessary is the prescribed antibiotic since he only seemed to have a cold (in fact, we decided not to fill that prescription and it turned out he clearly didn’t need it)?
• Perhaps most importantly, how do we monitor his progress and know how often to give him the inhaled meds?

Ryan seems to be doing fine now, but we clearly need to set up more of an asthma care plan to be prepared if/when something else triggers another respiratory reaction. I hope I can find the right tools to help me and his mom manage this condition in the long term.