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Entering the era of participatory medicine

I’ve returned from a week of Health 2.0 immersion on the west coast. The top-line finding: we’ve entered the period we can call Participatory Medicine. For some, like the pioneering Gilles Friedman of ACOR, this is nothing new. Other people have never heard of it. It’s global. It’s local. It’s a movement and a verb, as I pointed out thirteen months ago following the inaugural Health 2.0 conference.

Here are some reflections…

On Tuesday, I appeared on a panel on Health 2.0 at the Commonwealth Club in San Francisco for KQED public radio, sponsored by the California HealthCare Foundation. The Club’s motto by founder Edward Adams is, "We only propose to find truth and turn it loose in the world." My fellow panelists resemble that remark! They were the inspiring Amy Tenderich, founder and blogger of Diabetes Mine; and the ebullient, motivating and insightful Dr. Ted Eytan, now with Kaiser Permanente. We riffed on the roots of H2.0, the risks and benefits of people sharing health information and opinions online, and prospects for the future. Amy and Ted were stellar and shared their special perspectives as patient and doctor, respectively. When the podcast online is available, I will point you to it.

Later that day, I had the pleasure of introducing a client who is starting up a Health 2.0 venture to my mentor and grantor at CHCF. We had a productive hour brainstorming some blue ocean possibilities in Participatory Medicine for underserved communities and people often alienated from a strictly western medicine perspective. California is our most diverse state, so American-health-delivery-as-usual isn’t a recipe for optimal health outcomes among citizens who come from very different spiritual, ethnic and cultural places. Furthermore, there is a growing cadre of people who want to integrate traditional medicine practices with western, allopathic methods.

On Tuesday night, we kicked off the Health 2.0 conference with those who were to present and moderate sessions for the meeting. The attendance this year doubled from about 500 to about 1,000, over-sold and densely populated at the Marriott south of Market in San Francisco.

The founders of the conference, Indu Subaiya and Matthew Holt, made several announcements kicking off the conference. A map illustrated that attendees were represented from countries the world over — from India, the UK, Germany, and a large contingent from the Netherlands. The Health 2.0 Accelerator is alive and grooving, with a growing roster of innovators linking up in the health information ecosystem nurture fast-track clinical research, health-y outcomes, and personalized health. We also announced the launch of Health 2.0 Advisors, spinning out of the Health 2.0 Conference; my colleagues Matthew Holt, Brian Klepper, Michael Millenson and I are providing advice to organizations interested in diving deep into Health 2.0. Learn more about us at Health 2.0 Advisors.

Wednesday and Thursday were early starts and 6 pm finishes. Indu and Matthew jam-packed the agenda with expert panels, demonstrations, and time for networking in-between. On the first panel that I moderated of Consumer Aggregators, we experienced demos from the Uber Players including Google Health, Microsoft HealthVault (with Kaiser Permanente), WebMD (featuring a Verizon employees health portal) and Yahoo! Health. I was very happy to welcome Aetna to my panel this year; I believe this health plan has been a leader in embracing IT and web tools for its consumer-driven health programs, and Mark Bertolini shared insider details of how web 2.0 tools drive efficiencies in the plan. One key stat that Mark mentioned: Aetna has one of the largest IT shops in the nation, with about 3,200 staff; and, he has calculated that web enhancements save the company tens of millions of dollars in unnecessary administration/paperwork.

Key point of the Aggregators: virtuous cycles can be built through trust and personalize experiences where your search gets you what you really want and need. Dr. Roni Zeiger of Google Health talked of the satisfaction he felt when a user of the service said to him, "I want my data." It struck me that that consumer health mantra could become the new, "I want my MTV," so I spontaneously sang my best Sting-impression from Dire Straits’ Money for Nothing in front of 1,000 attendees. Anything to make a point! Dr. Zeiger also remarked that more health questions have been asked of Google than of all the doctors in the history of the world. !!!

I was glad to be a member of Edelman’s Health Engagement Barometer panel that afternoon. Dr. Bill Crounse, head of Microsoft’s health group and someone I’ve met up with at HIMSS for a few years, represented a physician-expert view; so did Dr. Jay Bernhardt of the CDC, whom I met for the first time. I’ve been a longtime fan of Dr. Bernhardt’s efforts in building social media for public health at the CDC. The key points of the Health Engagement Barometer are that people globally believe that health is intensely personal, all about "me" and those for whom I care, and that expert opinion is most welcome — both from the experts I know now, such as my doctors — and experts that I don’t know, including Patient Opinion Leaders online, doctors I’ve yet to meet online, and health bloggers. I wrote more about the Barometer on here at Health Populi.

Countless demos of new technologies punctuated the two days — from pharmacy and pharmaceutical applications, to wellness and personalized health for individuals and caregivers, and social networks and rating services for providers and meds, care platforms…there’s an endless array of projects populating the Health 2.0 space.

What remains to be seen is how these services will link up and bring harmony to a fragmented health delivery and financing system? Dr. David Kibbe pointed out that, "A lot of Health 2.0 developers are doing it in isolation."

Although the big question about integration is impossible to answer for the moment, there are learnings and pearls to share from the conference….in no particular order…"There is a new second opinion…no one sticks to one expert source anymore," according to Nancy Turett, global head of health at Edelman

Among Clay Shirkey’s insightful comments was this one: "An engineer will say, ‘I’m building a trusted system.’ No, you’re not," he argued. Trust is in the eye of the beholder — not in the developer’s.

Christopher Parks of change:healthcare noted, "The health care buffet is behind us."

Kent Shachmut, VP of Health Initiatives at Safeway, said that 75% of the company’s health costs are in several disease states: diabetes, cardiovascular, symptoms rising out of obesity…

The irrepressible Jonathan Bush, founder of Athenahealth, observed that Athenahealth is "like a SABRE system for 65,000 doctors." He also commented on the positive attitude of the Health 2.0 crowd: "No one here seems to be Eeyore-y."

Dr. Daniel Palestrant of Sermo, now 90,000 physicians strong, noted that, "Ads by Google is not a business model."

Kerry Hicks of HealthGrades, the longtime health ratings firm, has learned that, "Nobody fantasy shops for an oncologist."

James Mathews, guru of Sage Software and global health trotter, knows that the U.S. is way behind other countries in the use of mHealth — mobile health applications.

He also opined that, "You can lie on South Beach and 30 miles away in Homestead (FL), it’s Rwanda."

Mari Baker of Navigenics points out that, "Knowing your genes is a teachable moment."

"We are finally at the beginning of patient-centric medicine, doing it where patients are," says Dr. Greene.

Reality-checking David Lansky of the Pacific Business Group on Health brought the heady crowd back to earth when he told us, "I really want to believe everything Alan (Dr. Greene) just said…" but David offered attendance to his employer constituents in the Group and not one took advantage of attending the Health 2.0 conference : 0

Dr. Robert Kolodner of ONCHIT argued for the disruptive approach to innovation as recommended by Dr. William Stead: "Try. Fail. Try. Fail. Try. Succeed. Deploy."

Dr. Kibbe, pragmatist, argued that while the "cup is half-full," "the health system tolerates tremendous duplication." He is concerned that some Health 2.0 companies are automating current inefficiencies. "Let’s not get subsumed into the legacy system," he implored.

Jane’s Hot Points: David Lansky’s key point about employers not being a significant part of the Health 2.0 community resonated with me. Health care in the U.S. has two major streams of funding: the government, and employers. Until employers don’t play the major role they do in this system — and for the next 5 to 10 years, they will probably continue to do so — we must bring large employers into the H2.0 conversation.

The recession economy actually brings an opportunity to extend a hand and listening ear to employers. I will be doing so over the next several months, and will share what I learn on that journey.

In the meantime, I look forward to continuing to work closely with innovators marrying web 2.0 tools to health to improve health outcomes, system efficiencies, mHealth, and an expanding era of Participatory Health.

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Dr. John GroholGary L Recent comment authors
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Dr. John Grohol
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Respectfully Jane, I don’t think it matters who pays and whether they’re a part of the conversation. Since the beginning of time, the conversation has been between the doctor and the patient. At some point, it got corrupted by adding in someone else who paid for the doctor’s services (it’s still the patient, just that the patient is paying for it through some intermediary as a “benefit” or tax). At the end of the day, the important conversation — the one about one’s health and disease treatments — absolutely has to be between the doctor and patient. If the employer… Read more »

Gary L
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Jane, thank you for this wonderful summary of ‘new ideas, and transformative solutions for patients, and providers….some new terms in there that I will have to ponder about. I could not make it to Health 2.0
Sitting at UCR Starbucks….young people are the future.