The smartest people in the country who are engaging in transformational health enterprises were invited to the HealthFoo unconference in Boston last weekend. And wow, I got to be there.
As my new friend Ted Eytan says, many of us felt we had a case of impostor syndrome — the view that someone had made a mistake and chosen me (me?! me!) for this gathering organized by Tim O’Reilly and Sara Winge at O’Reilly Media, in collaboration with the Robert Wood Johnson Foundation team including Stephen Downs, Paul Tarini and others, at Microsoft’s Northeast Research and Development Center in Cambridge, overlooking the Charles River.
Every conversation, every session, every casual interchange over coffee or in the halls, or at the conference schedule board, brought crackling excitement. People with different focuses sharing ideas — patient advocates, inventors, researchers, funders, government officials, policy experts, interactive designers, artists, writers, thinkers, organizers, scientists, doctors, data divers, software designers, administrators — had the opportunity to listen to others and share their views about new thinking and needed changes in health care.
Being there was terrific, and it seemed useful to write a bit about what I learned there. (Here’s kind of what it felt like.)
Then I stopped writing because my new friends are so smart (hat-tip Susannah Fox, for her piece from last year; Marya Zilberberg, this year; Regina Holliday, this year; Paul Levy, this year; and a host of others). And then I started writing again, because I learned so much. Then I stopped because it felt like I was gloating about a special party that I got invited to — and started writing, again, because I learned so much. Some high points follow, cut short beause I could write all day and all night but you might not want to read that much.
There’s a great deal of change going on around health-care costs.
Not the least of it: Dave de Bronkart, also known as ePatient Dave, tore into the health-care cost structure. He says he’s “fed up with lack of cost transparency and consumer control on previous treatments,” so, when seeking treatment for a new skin cancer, he published an RFP and the decision & outcome. Amazing.
David Wong, M.D., is the founder of SnapHealth, soon to be up and running. Serving the underinsured in Texas, he is an emergency-room doc and entrepreneur who is starting an on-line marketplace for health procedures. Very transparent, very forward-looking. A credit to the medical profession, and a clear-eyed visionary. He’s about to launch his business, and what he describes is very much like faircaremd.com, run by our friend Alex Fair, and PriceDoc, which just merged with HealthInReach, to form a new company with a very similar business model. Search for health-care providers online who are offering the services you want, and pick the provider and the price. SnapHealth takes a bit of a fee when the transaction is consummated.
ClearHealthCosts.com also got some props for our model: we’re publishing prices, and inviting people to share their prices in a crowdsourced platform, thus removing intermediaries to bring transparency to the health-care marketplace. We think people ought to be able to know what things cost in health care.
The health-care ecosystem is heading towards a participatory model, away from the authoritarian, paternalistic practices of yesteryear.
PatientsLikeMe.com, the fabulous patient support community, is just one place where individuals are meeting online to discuss and compare information about conditions they share, and to talk about treatments. illness trajectories, clinical trials, medications and the like. Jamie Heywood, his brother and a friend founded this enterprise after the Heywoods’ brother was diagnosed with ALS or Lou Gehrig’s disease at 29, and the family began looking for ways to extend and improve his life. The company describes as its missions “putting patients first, promoting transparency (‘no surprises’), fostering openness and creating ‘wow.'”
Another prime mover, ePatient Dave, is a force of nature. His blog announces that he “stomped the snot” out of kidney cancer, and became a voice of patient engagement. Funny, wry, direct, brilliant and very specific, he is a founder of the Society for Participatory Medicine, along with Susannah Fox, Associate Director, Digital Strategy, for the Pew Research Center’s Internet & American Life Project and principal author of the Project’s survey reports on e-patients and online health, and Gilles Frydman, pioneer of medical online communities and founder, in 1995, of the Association of Cancer Online Resources, the largest online social network for cancer patients. Joining hands with them are numerous others, including Regina Holliday, who paints and blogs and Tweets about putting patients first, as a moving advocate.
The large and growing “quantified self” movement, in which people measure and track the metrics that are important to them, is only one facet of this: The Fitbit, and other such devices that let you measure workouts and track them, are not just a fad. They’re an indication of the way people want to take charge of their health and decisions surrounding it. Steven Dean at PreHype and Alex Carmichael at CureTogether are among the forces in this movement.
Personal health records in electronic form are absolutely central to the effort to bring efficiency to the health-care marketplace.
It’s no longer good enough for people to fill out form after form on paper, and to have those forms take up office space and obstruct the delivery of health care and the attainment of wellness and prevention.
It’s time for us to own our own information. And own it we will.
Patients must repeat information on paper; providers must sift through information on paper. Paper, paper! It takes forever. Notifying patients who are taking a drug that’s been recalled, or who’ve received a device that is failing, would be easier with electronic records. Querying a database of diabetes sufferers to asses their responses to treatment would be a snap with electronic records. But the industry has created massive amounts of paper, and clings to that paper, creating obstacles to prevention and treatment.
This does not mean that all personal health records should be in the hands of one entity, but that’s sort of what has happened: The MIB group, a “risk mitigation” service for the insurance industry, and others like it collect information on all of us from various places and sell it. Their role in your insurance coverage is important. Pay attention.
By the way, if patients have access to their own information, they can be partners with care providers in creating wellness and treating illness. That’s what ePatient Dave did to beat his cancer. That’s what we all need to be able to do.
Research is in an exhilarating and terrifying state.
Jamie Heywood’s Ignite said it all: He questioned the quality of research at its very heart. We know a lot more than we used to about illness and wellness, but the research that is used to make decisions is of deeply questionably quality. Many treatments that have been routine are really not that helpful at all, and are actually shown to have little or no efficacy. (Angioplasty, anyone? Arthroscopy?) Hope that he publishes the piece; hope also that he’s wrong. But you should be afraid, because he’s probably right.
Instead of spending money on hospitals and doctors and device makers, it’s time for us to start spending money on patients and consumers.
The entire health-care market place is set up now to deliver money to institutions and providers, including big pharma, device markers, and all the intermediaries in the marketplace. Instead, the system needs to shift to spending money on patient-consumers, on wellness, on prevention. There’s a whole big discussion about whether patients should be referred to as consumers, and the answer is that they’re both.
One thing about which there’s little debate: we’re not spending the money right. Lygeia Ricciardi of the Office of the National Coordinator for Health IT at the Department of Health and Human Services conducted a thinkfest session on that topic. Lots of great ideas flowed; look for change to happen.
The clothesline paradox is maybe the most important idea to consider in this marketplace right now.
Tim O’Reilly, the O’Reilly Media founder, led a session on this topic, about how value is created and captured in the economy, specifically in health care.
In the financial crisis, O’Reilly said, a number of financial services companies captured a lot of value for themselves, but didn’t really create value for the economy. He also pointed to the creation of the value of the Internet by Tim Berners-Lee, which resulted in the capture of value by companies like Google and Facebook.
PatientsLikeMe is creating value that’s not necessarily immediately monetary, he said, and yet perhaps that value will be captured over time.
“If you take down your clothes line and buy an electric clothes dryer the electric consumption of the nation rises slightly,” writes Peter Baer in a piece about the clothesline paradox in the Whole Earth Catalog. “If you go in the other direction and remove the electric clothes dryer and install a clothesline the consumption of electricity drops slightly, but there is no credit given anywhere on the charts and graphs to solar energy which is now drying the clothes.”
It’s a central idea to improving the health-care system. If the system now pays for kidney dialysis yet fails to adequately pay for measures to prevent the diabetes that gives rise to the kidney disease, that’s an example of failure. Jini Lee spoke eloquently of a diabetes clinic that did a great amount of good prevention work, but lost funding and had to close. And if Jamie Heywood is creating value by bringing patients together to share information about conditions and trials and disease trajectories and treatments, where will that value be captured? The extremely smart Alex Tam mentioned a northern California medical practice that does video and nurse-practitioner work to extend the care umbrella in a cost-effective manner.
Aaron Schwartz, s a PhD candidate in Health Policy and a medical student at Harvard, cited a 1960’s paper about how we measure value in the health economy: information asymmetries, he said, make it hard for people to understand how much a given treatment might have benefited them, and whether a different treatment might have benefited them more. A great discussion, by the way, with many more smart contributions than I have mentioned here.
So what kind of health-care system do we want, anyway?
Here’s one answer: one that’s run by the 150 or so transformational thinkers who gathered in Boston last weekend.
Thanks to the O’Reilly folks and the Robert Wood Johnson folks, and to all my fellow FooCampers. Thanks for your wisdom, your support and your energy. Wow. Thank you all. Together, we can change the world.