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

Kaiser Permanente released two new ads as part of its ongoing “Thrive” campaign. Although both are quite entertaining, the one that struck me most is titled, “Connected.” Much has been made of Kaiser’s multi-billion dollar investment in health information technology (HIT), but perhaps what has received too little attention is how they structured it.

What the “Connected” ad does masterfully is to visually, technologically, and audibly demonstrate that all its technological investment has its member at the center and is focused on facilitating connections for that member. Connections to data, information, clinicians, and ultimately to everything that a member might need to manage their health and “thrive.”

This should not come as a surprise. When Kaiser launched their Epic implementation several years back, they decided to call it “HealthConnect.” Now, their vision is playing out among the more than 3 million Kaiser members taking advantage of that connectivity.

The connection theme deserves more attention in the national debate on reforming the health care delivery system. Connections among people and information can be incredibly powerful in enhancing clinician-patient relationships, creating truly patient-centered medical homes, and facilitating participatory medicine.

It’s important to note, however, that connection is about far more than simply creating electronic links between people and data. In order to maximize the connection potential, the data need to be translated into understandable, meaningful, useful information for each user. That information needs to be accessible in a convenient way for each person, and it must be proactively delivered to them in a just-in-time fashion in a way that engages them to initiate effective actions.

When we put all that together, those connections can create effective, efficient health care delivery.

For those of us parents with twins, we strive to prevent our homes from being natural laboratories for studying our children. Sometimes, it’s hard to overlook.

When my twins were toddlers, they often — like toddlers in general — were playing in the same space but not playing together. In child development lingo, that’s called “parallel play.”

For toddlers, parallel play is a natural phenomenon and nothing to worry about. However, when that term needs to be deployed to describe the communication between clinicians and patients, it’s time to shout, “Houston, we have a problem!” Parallel play in the clinician-patient relationship represents the antithesis of “participatory medicine.”

Thanks to Jane Sarasohn-Kahn at the Health Populi Blog, I came across new data from Harris Interactive that examined — among other things — whether patients share what they find on the Web with their doctors. When asked in 2007, 42% of consumers responded that they “never” share their online health info with their physicians; by 2009, that percentage rose to 56%. Yikes!

We also know from Pew Internet Project data that consumers’ number-one preferred source of health information is their docs, so we have to presume that this hidden Web information is not a desired situation from patients’ perspectives. Barriers to sharing information probably include some combination of: lack of adequate time; poor systems to facilitate information prescribing and exchange; and fear that doctors will not respond positively to the information consumers bring into the conversation from external sources.

The Internet should be a tool that helps elevate the level of discussion between clinician and patient, and it can be. Clinicians and delivery systems that have developed systems and infrastructure to facilitate information therapy (Ix) ensure that Web health information is built into the care delivery process. That facilitates better continuity of care and lays the groundwork for more holistic approaches to care delivery such as a truly patient-centered medical home.

Sarasohn-Kahn suggests that the recession may be part of the reason for this increase in parallel play, and she may very well be right. But whatever it is, it’s likely to exacerbate an already-fragmented care delivery process and lead to worse care for consumers unless we build more Ix infrastructure into the system.

Kevin Sack has a nice piece in today’s New York Times titled, “Health Co-op Offers Model for Overhaul” about the role that cooperatives might have in the health care reform debate. “Co-ops” suddenly are a hot topic in Washington, sparked by loose proposals from Senator Kent Conrad (D-ND) that are trying to bridge the ideological divide that has formed between proponents and critics of a public plan option in a comprehensive health reform bill. Senators like Conrad view co-ops in a favorable light largely because of perceived corollaries with rural energy co-ops in places like North Dakota.

But the article is really about Seattle-based Group Health Cooperative (a founding member of the IxAction Alliance), one of the country’s best examples of progress that can be made by implementing health information technology (HIT) with a patient-centered care lens. Sack addresses this head on when he quotes Group Health’s leader:

“There’s a kind of accountability to the patients in our system,” said Scott Armstrong, president of Group Health. “And when you bring the principles of a cooperative to bear, patients feel responsibility for holding the system together and for their own health.”

Five years ago, I did a site visit at Group Health and spent time with administrators, clinicians, and — perhaps most importantly — with the consumer-elected Chair of the Group Health Board of Directors. In the resulting best practices white paper, “The Arrival of 21st-Century Health Care: Group Health Cooperative Reengineers Its Delivery System Around Information Therapy and Patient-Centered Informatics,” the principles of consumer governance and empowerment came through loud and clear:

“Group Health’s founders established the HMO on cooperative principles and envisioned a three-pronged approach to its operational structure:

• Governance resides with the members through the consumer-elected board.
• Managers bear accountability for administration of the health plan.
• Physicians have responsibility for medical decision making in their independent but exclusively contracting group practice.

The founders created this model to facilitate an egalitarian approach to how medicine and health care should be run and consumed. They sought to democratize the practice of medicine and to create a health care delivery system that was completely focused and centered on the needs of its members.

Now, 21st-century technology has facilitated execution of that vision. ‘It’s the realization of a dream,’ said Debbie Ward, Group Health member and former chair of its board of directors.”

Indeed, as has been stated here and by many others recently in the debate over “meaningful use” of HIT, new technologies should be deployed as tools to achieve a patient-centered care delivery system vision that supports more effective and efficient care. That approach is primarily what has facilitated Group Health’s success in achieving many of the advances in participatory medicine, chronic care management, and implementation of the patient-centered medical home (PCMH) that Sack describes throughout the article. In fact, Group Health has been working on PCMH models of care delivery for many years before it became quite so fashionable, but its patient-centered HIT strategy created a platform for taking PCMH to the next level.

I’m not quite sure what to tell Senator Conrad. Even though the details of his co-op plan remain unknown, I’m quite confident he won’t be proposing a series of Group Health-type arrangements in which the country’s doctors all report to their patients. And I don’t know how much good it will do just to have co-ops acting as insurance purchasers (they bring back memories of the infamous HIPCs — health insurance purchasing cooperatives — that were all the rage during the 1993-94 health reform debate). On the other hand, if they provide a political vehicle for moving us substantially further down the road to universal coverage and are paired with other major advances in patient-centered care delivery, I’m certainly not going to complain.

The Senate Health Education, Labor & Pensions (HELP) Committee released its piece of the comprehensive health care reform bill on June 9. Despite being 615 pages long, several key provisions of any health care reform legislation are not in the HELP Committee bill because they are issues that fall under the jurisdiction of the Finance Committee. Most of the issues related to Medicare, Medicaid, other public options, and taxes (basically how to pay for expanded coverage) will be proposed in the Finance bill, likely coming out next week.

But HELP is first to the table, and may start marking up this bill as early Tuesday, June 16. So it’s worth looking at the bill and asking: What key features of it facilitate more patient-centered health care delivery?

Perhaps most importantly, the provisions of the Wyden-Gregg “Empowering Medicare Patient Choices Act” (see here for overview) that fall under the jurisdiction of HELP are included in Sec. 217, Program to Facilitate Shared Decision-Making (pp. 301-311). Much of the meat of this bill (Medicare carrots and sticks) comes under the jurisdiction of the Finance Committee, but this is a critically important start.

Sec. 212. Grants to Establish Community Health Teams to Support a Medical Home Model provides several opportunities for driving patient-centered care delivery and the provision of information therapy (Ix), though much will depend on how it is implemented. Opportunities include emphasis on “payment that recognizes added value to patient in a patient-centered care; [sic]” (a few typos aren’t surprising when those Hill staffers are working round-the-clock these days). There is also a recognition that support should be provided to PCPs to “provide quality-driven, cost-effective, culturally appropriate, and patient- and family-centered health care” and “promote effective strategies for treatment planning…sharing information, treatment decision support…”

The role of Ix in patient-centered discharge planning and reducing readmissions is highlighted in both the medical home section and in Sec. 216. Reducing and Reporting Hospital Readmissions (see here for discussion of Ix role in this area). Ix and patient-centered HIT are also an important part of the solution for Sec. 213. Grants to Implement Medication Management Services in Treatment of Chronic Disease.

Admittedly, I haven’t finished all 615 pages, so I’ll probably find more in here over the weekend. If you think I’ve missed answers to my question (What key features of it facilitate more patient-centered health care delivery?), please add in the Comments section.

There was a song from the 1960s musical “Hair,” that begins “LBJ took the IRT…” Some days in DC, it feels like the wonks’ version of that. In other words, an abundance of acronyms but a lot more debate about HIT and “meaningful use” and a lot less long, flowing hair and “youth of America on LSD.”

There was an excellent briefing on Capitol Hill yesterday, organized by AARP and sponsored by the Alliance for Better Health Care (ABHC). It was officially “off the record,” so I won’t quote anybody, but it’s safe to say that there was strong consensus among the diverse panel on several important issues.

ABHC, a multi-stakeholder group that promotes comparative effectiveness research (CER) addressed several issues, including CER’s role in addressing disparities, integrating CER into clinician workflow and health plan activities, and the employer perspective on CER.

Several issues relating to consumers emerged from the discussion. First, CER is critically important to filling information gaps for clinicians and patients. Second, if we want to CER to truly help patients, they need to be at the table in CER design to identify priorities and ask research questions. Third, CER findings need to be broadly disseminated, including to consumers, which means that they need to be translated into a way that makes CER findings meaningful to consumers.

Finally, CER dissemination is not enough to ensure the consumer engagement in care that is so critical to better, more efficient health care. We need to come up with creative strategies — like information therapy (Ix) — to ensure that CER findings are well integrated into the care delivery process in a way that supports shared decision making (SDM) and participatory medicine.

I also attended a meeting the eHealth Initiative (eHI) Privacy Workgroup hosted yesterday with staff from the Government Accountability Office (GAO) that are studying privacy issues related to health information technology (HIT) implementation. GAO is examining privacy practices in health information exchange (HIE) organizations and other provider networks that exchange clinical patient data.

CareEntrust is unusual among HIEs in that it decided to develop the consumer application first, which it rolled out in May 2007. Consumers in Kansas City can now access through a secure portal a wide range of personal data on medications, lab results, visits, procedures, immunization, vital signs, demographics, and allergies. It turns that, thus far, about 18% of consumers now use these data — certainly better than the general population, but still a lot of room for improvement.

Also from the meeting, I heard that the operational HIEs with opt-out policies report very few (far less than 1%) of consumers are opting out of participation in the HIE. Interesting note, however, about what both Kansas City & Memphis HIEs say about the few that do opt out. I’m not sure exactly what it means, but it turns out that most of these opting-out consumers come from the IT industry. Is that funny or scary?

A final interesting point of discussion: Data related to discharge and care coordination have been defined as “operations” data (I gather through HIPAA). In many cases, however, there’s a strong argument to be made for it to be redefined as “treatment” data in order to facilitate greater continuity of care and what the Institute of Medicine recommends in terms of “continuous healing relationships.”

I’m helping to facilitate (along with patient-centered care icon, Susan Edgman-Levitan, from the Mass General Stoeckle Center for Primary Care Innovation, and Eva Powell from the National Partnership for Women & Families) a breakout on consumer participatory engagement strategy at today’s Stakeholders Working Meeting of the Patient-Centered Primary Care Collaborative.

From past posts (see “Home Is Where the Health Is” and “Where Should the ‘Medical Home’ Be?”), people might get the sense that I’m feeling increasingly radicalized about the need to re-focus the patient-centered medical home (PCMH) model on the needs of the patient. Don’t get me wrong. I completely support the need to revitalize primary care, and shift reimbursement to support a whole person orientation to their patients. I just want to make sure that PCMH isn’t focused more on the needs of the physician than those of the patient — such as the emphasis on “physician-directed medical practice.” In the breakout session (as well as in some of the earlier sessions) there were others who voiced a similar concern.

The National Partnership for Women & Families has published some consumer perspective principles on medical home and HIT, which are helpful. I would add a few additional points to those well-designed principles.

• In a true PCMH model, clinicians support patients in managing their health throughout their daily lives.
• Health goals and priorities are defined by the patient with support from clinicians, family, and other caregivers.
• Regarding the HIT principle that, “Individuals should be able to access their personally identifiable health information
  conveniently and affordably,” we should add: “That information should be accessible in a way that that consumers can understand and use it, and that facilitates action.”

In the session before lunch, a panel focused on “engaging the consumer” as part of the PCMH model. Fan Tait, MD, from the American Academy of Pediatrics, says that “If it’s not patient-centered, it’s not a medical home.” The panel outlined a series of new resources available for engaging consumers.

Here are some interesting pieces from today’s meeting:

• Richard Antonelli, MD, MS, Medical Director for Boston’s Children’s Hospital Integrated Care Organization, shared some interesting data from their care coordination efforts: 32% of non-visit care coordination interactions prevented some reimbursable event.  Antonelli said, “It’s not sustainable.” He’s right.
• Suzanne Mitchell, MD, MSc, from Boston University School of Medicine, had some insightful comments for clinicians in thinking about how to structure the primary care encounter with their patients: “Be yourself; everyone else is taken,” and “Detached interaction is out; healing relationships are in.”
• Christine Sinsky, MD, from Dubuque, Iowa, has a nice architecture for facilitating integrated, continuous care. She says, on the day of a visit, they like to say, “The next appointment starts today.”
• Bob Doherty from the American College of Physicians says that the Senate Finance Committee is coming out with a 50-page document outlining payment reform options in the broader health care reform debate. That will include PCMH and other ways to align incentives for a more sensible reimbursement system.
• Shannah Koss asks the representative from the Centers for Medicare & Medicaid Services (CMS) why — given the primary care physician shortage — the Medicare PCMH demos require a physician-led practice. James Coan from CMS answers, “Because the legislation says so.” Of course, that doesn’t explain why the PCPCC and the PCMH coalition insist on it.
• David Nace, MD, Chief Medical Officer from McKesson, presents on the connections between HIT & PCMH. He emphasizes the new PCPCC document, “Meaningful Connections: A resource guide for using health IT to support the patient-centered medical home,” which includes a section that summarizes the report that we wrote for the California HealthCare Foundation titled, “Helping Patients Plug in: Lessons in the Adoption of Online Consumer Tools.” He also emphasizes that the HIT “meaningful use” definition must be created in a way that it leads to consumer engagement and access to health information. Nace argues that the question should be,”How do we empower consumers through the use of online tools?”

Here are some things that struck me about the first half-day of the first-ever “Health 2.0 Meets Ix” Conference in Boston today.

• I agree w/ Don Kemper that there are huge problems with the model of the “role of the patient is to be patient.” See “Ix Word Play: The Im-Patient Consumer” for more detail.
• This dichotomy of Health 2.0 for the rare/complex conditions (the “long tail”) and Ix for reducing known gaps in care (managing common chronic conditions) is interesting, but I think it’s a vast oversimplification. The reality is that you still need both — the strategy behind the blending is critically important.
• Matthew Holt notes that search doesn’t mean you get the right answer…just gets you in the right neighborhood. Sometimes that’s good, but often consumers want some more targeted leads.
• Interesting to see the PSA (prostate cancer screening) example used as demonstration of Health 2.0 value. Not that it isn’t, but PSA testing is often also cited as a great Ix opportunity, because prescribing evidence-based decision aids on PSA has significantly reduced unnecessary PSA testing.
• Both Amy Tenderich & Rushika Fernandopulle emphasized a point discussed here that we need to focus on how we help consumers manage the 525,500 minutes of the year they live outside the clinical delivery setting, not the 100 minutes they spend in it.
• James Hereford made 7 fabulous points in 7 minutes about building Ix into the delivery system:
  • You have to deliver what patients want (doesn’t matter how cool the technology is).
  • It has to make sense for clinicians from a clinical perspective.
  • It has to make sense for from a clinical workflow perspective.
  • Focus processes on the value proposition for the patient (I may have mangled this one a bit).
  • Information needs to be common, ubiquitous, and well-designed.
  • Health care is all about trust; whatever we do needs to enhance trust in the patient-provider relationship.
  • Incentives are critical.
• Don Caruso (a family physician in a small community) talked about how one key for him to practicing better is “figuring out how I can use patient information.”
• Caruso also talks about the extension of the patient-centered medical home model to more of a “medical village” by applying the PCMH concept to preventive care as well as chronic care.
• Rushika Fernandopulle points out that we need to go well beyond patient as partner; it’s that “patients need to control their own health care.”
• To do this, Rushika says, we have to engage the purchasers (employers, unions, etc.) because they’re the ones footing the bill.
• Finally, Rushika suggests that “the power of Health 2.0 is empowering patients to vote with their feet.”

Lots of great stuff to chew on, but so much more coming tomorrow @ 8:00am. Right off the bat, we’ll jump into the policy issues that a number of questioners in the audience couldn’t wait to talk about today.

We’ll also in the first session get into issues of safety-net populations vis-a-vis Ix & Health 2.0, something notably absent from today’s discussion.

Will sum up again tomorrow, but the live tweeting has been crazy…and also jamming up the lav mikes, producing some sound system challenges. I think we’ll be in better shape on that front tomorrow.

Following up on last week’s post, “Home Is Where the Health Is,” here’s part 2 of my report on the the CHCF Health Care Leadership Network/CCI MD Alumni Session Spring Meeting in San Francisco.

The afternoon panel provides several varied perspectives on the patient-centered medical home (PCMH). Ed O’Neil, PhD, who directs the UCSF Center for the Health Professions talked about the need to create new practice models. In the continuum of prevent-diagnose-treat-manage, most action from health care professionals has been in the middle (diagnosis & treatment). Future emphasis should be placed on prevention — which has great leverage over the long term but little short-term effect — and management, for which we currently and inappropriately deploy a primarily acute-care armamentarium.

Joe Scherger, MD, from UCSD, contrasted traditional care that is episodic and reactive (both of which make it visit-dependent) and provider-controlled with where the medical home should go. Specifically, he pointed to — as I often do (including in my post last week and presentation at this conference) — the Institute of Medicine’s first recommendation for health care delivery redesign: Create continuous healing relationships that is strategically proactive, coordinated, non-visit-based, delivered by a team, and provides a continuous cycle of care. For more, see his BMJ article, “Primary Care Needs a New Model of Office Practice.”

Paul Wallace, MD, the Chair of the IxCenter Board of Directors and from Kaiser Permanente, said that one of the most important aspects of the PCMH debate is that it is one of the first issues to align discussion around both payement reform and delivery system reform. We have serious problems to solve, such as inadequate patient care, and  the field of primary care will no longer exist given the single-digit rates at which medical schools are producing residents for primary care specialties. The PCMH solution needs to focus on population care and engaging patients as care managers. We need to remember that “the medical home is not about a place.”

Betsy Stapleton, FNP (scroll down here), is a consumer engagement consultant, who pointed out that many of the critical elements of a successful medical home identified by the other panelists derive from models developed by nurse practitioners. This profession has made great contributions to advancing the field of patient self-management support.

Arnie Milstein, MD, from the Pacific Business Group on Health, found four practices that effectively demonstrated how PCMH approaches can lower total health care costs. They relied on two re-engineering goals: (Primarily) lowering the frequency of health crises (acute events) and (secondarily) reducing the cost per service. They applied three ingredients to these two goals: Salient caring (tailored to reduced hospital use), team-based production, and tight supplier management. It’s also worth reading Milstein’s Health Affairs piece titled “Medical Homes and Medical Home Runs.”

Natanya Alon, from the National Partnership for Women & Families, focused on what makes a PCMH truly patient-centered — that is a home from the patient’s perspective:

• 24/7 access
• Knowing about me & remembering
• Support of self-management
• Providing the information I want

This requires interdisciplinary teams that support patients and caregivers as partners in care management and foster an environment of trust and respect. She summarized by describing a patient’s comment, “It’s a gift whenever my doctor makes me feel like we’re in this together.” The National Partnershp has some additional useful PCMH materials including patient brochures and consumer advocate guides.

David Shute, MD, talked about the PCMH pilot at Care Oregon.

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.