{"id":9809,"date":"2011-07-19T12:28:50","date_gmt":"2011-07-19T16:28:50","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=9809"},"modified":"2011-07-20T09:31:07","modified_gmt":"2011-07-20T13:31:07","slug":"what-i-learned-at-health-foo","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2011\/07\/what-i-learned-at-health-foo.html","title":{"rendered":"What I learned at Health Foo"},"content":{"rendered":"

Just in case anyone is curious: my notes from Health Foo, a meeting held last weekend in Cambridge, MA. It’s long, so skim for the 9 lessons<\/strong> if you want a shortcut.<\/p>\n

<\/p>\n

What<\/strong>: Foo Camp is an unconference, constructed on the spot by the people who show up, with just a few guidelines set out from the start.<\/p>\n

Background on Foo Camp:<\/p>\n

http:\/\/www.enotes.com\/topic\/Foo_Camp<\/a><\/p>\n

Who<\/strong>: The O\u2019Reilly team and the RWJF team collaborated on the invitation list which included a mix of gamers, clinicians, health entrepreneurs, investors, global health activists, federal and state government health officials, patient advocates, designers and [I’m sure other categories I am missing].<\/p>\n

Background on how Health Foo came to be:<\/p>\n

http:\/\/rwjfblogs.typepad.com\/pioneer\/2010\/12\/tim-oreilly-to-host-unconference-for-health-tech-leaders.html<\/a><\/p>\n

A growing list of people I met who also happen to use Twitter:<\/p>\n

http:\/\/twitter.com\/#!\/list\/SusannahFox\/health-foo <\/a><\/p>\n

Where<\/strong>: Microsoft\u2019s NERD Center<\/a> in Cambridge, MA, is superlatively cool. The mix of open and closed spaces of different sizes was conducive to great meetings, chance encounters, and a feeling of possibility (including the possibility of falling down the winding staircase \u2013 look sharp!).<\/p>\n

When<\/strong>: The sessions didn\u2019t officially start until 10am Saturday, July 16, but we all got together for dinner on Friday and breakfast on Saturday morning, with generous amounts of time for socializing (like 3 hours for cocktails\/dinner, 2 hours for breakfast).<\/p>\n

My notes<\/strong> (warning: I listened and took a few notes but I\u2019m leaving out huge swaths of the experience, including some people\u2019s names, b\/c I was so immersed in the Be Here Now.):<\/p>\n

On Friday night after dinner and opening remarks (urging everyone to put away their devices, which I did) we all got a chance to nominate ourselves to lead sessions. A grid was printed on huge boards \u2013 times down the side, rooms listed across. Large post-its (about 5×8 inches) and sharpies were available. I described my session as \u201cPeer to peer health: Harnessing the power of people who want to help themselves. How to trigger the avalanche?\u201d Paul Levy\u2019s blog post has some great photos of this process: http:\/\/runningahospital.blogspot.com\/2011\/07\/health-foo.html<\/a><\/p>\n

Two other sessions seemed similar so I teamed up with those leaders: Ron Gutman of Health Tap (a start-up by this serial entrepreneur) and Jon Kuniholm of Open Prosthetics Project (a labor of love by this retired Marine who lost his right hand in Iraq). We were originally scheduled for Saturday afternoon but I convinced them to switch to Sunday morning so I could attend a competing session (and b\/c I wanted to get more of the event behind me before I led a session).<\/p>\n

It was incredibly difficult to choose which sessions to attend. There were 5 going on at once for each time slot, the descriptions were sometimes cryptic, and I didn\u2019t know most of the session leaders. At 10am on Saturday I ran into Linda Stone who urged me to join her in Stephen Bezruchka\u2019s session.<\/p>\n

Bezruchka had fascinating slides comparing countries\u2019 health data along various lines, both inputs and outputs. He showed how personal behavior turns out to have little effect on life expectancy when you look at the aggregate. For example, Japan has the highest rate of smoking among men in the world and the U.S. has among the lowest, but the longevity effect is the opposite of what you\u2019d expect just looking at those data points. His thesis is that the community-oriented culture in Japan has a salutary effect that we should take note of \u2013 that \u201ccaring and sharing is a social determinant of health.\u201d People living in societies with higher rates of social cohesion \u2013 being there for one another \u2013 live longer. He sharply critiqued American society and its trend toward atomization, disconnection, and inequality. One ray of hope I tried to bring: Pew Internet\u2019s report on social networking sites and our lives: http:\/\/www.pewinternet.org\/Reports\/2011\/Technology-and-social-networks.aspx<\/a><\/p>\n

(Lesson #1: Follow Linda Stone anywhere she\u2019s going \u2013 or latch onto someone else who is saying \u201ctrust me, this person is amazing.\u201d)<\/strong><\/p>\n

Background on Bezruchka:<\/p>\n

http:\/\/depts.washington.edu\/deptgh\/map\/people.php?id=3<\/a><\/p>\n

https:\/\/www.youtube.com\/watch?v=Q0X2exKyC7k<\/a> (TEDx talk which closely approximates the session)<\/p>\n

For the second session, I followed my instincts up a winding staircase to the Treehouse, a cozy, circular space meant to hold 8 people. A dozen were already inside but I squeezed in and sat on the floor, just in time to hear Eduardo Jezeirski say \u201cnothing I build is half as good or useful as what people in the community could design.\u201d The session was about sparking local innovation in developing countries.<\/p>\n

A seminal example was passed around: the Jaipur foot, a vulcanized rubber foot with a stiff heel for amputees in rural India. The developers had noticed that U.S.-made prosthetic feet would break after a few months in rural India, where people walk long distances, with no shoes and through wet conditions \u2013 a completely different use case from the typical American amputee. The engineers also noticed that local people had no way to fix the U.S.-made apparatus, which requires tools and some special mechanical knowledge, so the locally-generated design was simpler and could be repaired by the user.<\/p>\n

I was so out of my depth in this session that I can\u2019t do justice to most of the rest of the conversation among people like Aman Bhandari of HHS and Meg Wirth of Maternova.net. However, I did take notes on an inexpensive prosthetic knee which includes a pedometer and the guts of a cellphone. It sends an SMS back to a central office with the number of steps taken that week \u2013 if none were taken, the local NGO can get in touch with the person to be sure the knee is still working and they\u2019re OK. It\u2019s Quantified Self for appliance maintenance, not personal fitness. And it removes the record-keeping burden from the shoulders of the clinic workers, who couldn\u2019t possibly keep track of each prosthetic\u2019s status.<\/p>\n

It was an amazing session in which I stretched my mind, yet felt physically cozy, listening to quiet voices \u2013 not presentation-volume. <\/strong><\/p>\n

(Lesson #2: Pick some sessions about which you know nothing. Lesson #3: Architecture can have a significant effect on the experience of a meeting.)<\/strong><\/p>\n

Background on Jezeirski:<\/p>\n

http:\/\/trackerblog.trackernews.net\/2011\/06\/14\/ilabs\/<\/a><\/p>\n

Background and a photo of the Jaipur foot:<\/p>\n

http:\/\/www.goodnewsindia.com\/index.php\/Magazine\/story\/jaipur-foot\/<\/a><\/p>\n

http:\/\/instagr.am\/p\/Hyn0Q\/<\/a><\/p>\n

For the third session I was intrigued by the simplest post-it \u2013 something about building a human phenotype, plus a sketch of cut-out paper dolls. Spoiler alert: it was AWESOME.<\/p>\n

I walked in to a standard-looking meeting room just as Zack Booth Simpson was diving into a demo of Traitwise.com. My choice to stay was helped by the fact that I recognized some people in the room whose opinion I trust.<\/p>\n

I believe Traitwise represents a possible future for survey research and it was definitely the most relevant-to-Pew-Internet thing I learned at the whole event, so go now to the site and answer a few questions since it\u2019s the quickest way to understand what it is about:<\/p>\n

https:\/\/traitwise.com\/<\/a><\/p>\n

I can\u2019t do justice to the discussion except to say that it sparked a lot of ideas in a lot of different sectors. For example, one person in the room is involved in epidemiology and wants to use it for the sorts of questionnaires used to track outbreaks, such as on cruise ships or among people who frequented a certain restaurant chain. These questionnaires are often long and boring: Did you eat salad? Did you eat fish? Did you eat fruit? Etc. for 120 questions. Traitwise would be able to detect patterns and correlations, sifting the common from the uncommon, and quickly serve up only the most useful questions.<\/p>\n

I was intrigued by the way they keep it fresh and amusing, serving up random questions so people stay engaged. Traitwise notices which questions get skipped and which are popular \u2013 and then serves up that one popular question more often. Any registered user can suggest a question. People can vote questions up or down. People can rate the correlations (and to quote Zack: \u201ccausation is overrated.\u201d)<\/p>\n

An example of a custom health inquiry is the yes\/no question introduced with the following text: \u201cScleroderma is a chronic systemic autoimmune disease (primarily of the skin) characterized by fibrosis (or hardening), vascular alterations, and autoantibodies. I have scleroderma: yes\/no.\u201d You can imagine how intriguing it would be for a whole scleroderma community to answer 200+ questions, including that one, and then look for correlations. Indeed, they have done so \u2013 and so has a Marfans community.<\/p>\n

I could spend hours on the site answering questions and thinking of questions I\u2019d like to ask. As I told Zack, I haven\u2019t been this scared and inspired since a Procter & Gamble executive said they no longer spend money on surveys or focus groups. Instead, they \u201clisten more than ask\u201d and monitor the social stream. Survey researchers, get ready to re-tool. <\/strong><\/p>\n

(Lesson #4: Go into any room where Tim O\u2019Reilly, Steve Downs, Gilles Frydman, and Farzad Mostashari are leaning forward in their chairs.)<\/strong><\/p>\n

Update: Since the above lesson is not, um, widely applicable, here’s an alternative: Design research that invites participation from your target group.
\n<\/strong><\/p>\n

Background on Zack Booth Simpson and Traitwise:<\/p>\n

https:\/\/www.traitwise.com\/home\/about_us<\/a><\/p>\n

At lunchtime I grabbed a sandwich and sought out a group of people I didn\u2019t know. My friend David Hale joined us and asked that we go around the circle introducing ourselves by our interests, not our jobs. It turns out we had 3 musicians, 3 dancers, and a snowmobiler! <\/strong><\/p>\n

(Lesson #5: Honor what Sara Winge said at the start of Health Foo: \u201cYou are here, not because of your job, but because of who you are\u201d \u2013 and talk to strangers.)<\/strong><\/p>\n

As I wrote earlier, I convinced Ron and Jon to switch our session to Sunday morning so I could participate in Abbe Don\u2019s 2-hour IDEO process demo \u2013 and boy, am I glad I did. It was exactly the kind of hands-on, brainstorm-y session I needed after a mind-bending morning.<\/p>\n

Abbe did a quick presentation about how IDEO approaches their projects, then gave us two case studies to ponder. She split us into two teams and gave us specific tasks \u2013 write down one personal health goal on post-its and group them on a board, for example. It was so participatory that I only took one note \u2013 that IDEO asks \u201cHMW\u201d questions to help prompt new thinking: \u201cHow Might We\u2026\u201d The final project for my team was to create a visualization of health that would motivate someone to change their behavior. We had a wonderful \"Goalposts<\/a>time brainstorming and then cutting, pasting, taping, and drawing our way to complete \u201cThe Goalposts of Life\u201d \u2013 a representation of 3 lives, the grandfather\u2019s cut short by a heart attack (with pictures of what he left unfinished), the father\u2019s (with pictures of his new healthy lifestyle and longer life goals), and the son\u2019s (all the dreams he has for the future).<\/p>\n

(Lesson #6: Go into any room where arts & crafts materials are laid out.)<\/strong><\/p>\n

Saturday evening featured Ignite speeches \u2013 I think there were at least 10 (probably too many, to be honest, but I enjoyed them all). It was a great way to get a taste of the range of expertise and experiences at the event.<\/p>\n

On Sunday morning, I hosted a session along with Ron Gutman and Jon Kuniholm about peer-to-peer health and how to spark widespread use of consumer health tools. A great group showed up \u2013 probably about 20 people in a small meeting room so it had an intimate atmosphere. Since I helped lead the discussion I didn\u2019t take any notes, but I appreciated how open people were to thinking about consumer engagement in new ways. We talked about challenges to adoption: people who are truly offline, people who see no reason to engage in their health, technology that is simply a pain to use. We also talked about enabling factors: a life-changing diagnosis that prompts engagement, mobile adoption, technology that is easy to use, communities led by people who model good behavior (such as responsiveness), wider awareness that these tools exist (either in mainstream press or word of mouth).<\/p>\n

Here’s the gist of what I said:<\/p>\n

A majority of U.S. adults are online, have a cell phone, are using social network sites, are gathering health information online. A significant chunk have smart phones, track their own health data, post health related material online, and look for other people who share similar health concerns.<\/p>\n

The tools are in place. The culture is shifting to expect that people have access to information and each other. But we are still at the early adopter stage in participatory medicine. What are the elements that must be in place for this thing to break wide open?<\/p>\n

My take-away was that I am on the right track, focusing on this phenomenon of peer-to-peer health<\/a>.<\/p>\n

(Lesson #7: Be brave. Everyone is there to contribute and even nurture, so put your ideas on the table.)<\/strong><\/p>\n

Quick sidebar on the nurturing environment: Jamie Heywood brought his adorable 8-month-old son, Miles, on Sunday and everyone took turns holding him. It was that kind of meeting.<\/p>\n

It also struck me that the DIY aspect of an unconference creates a start-up feel \u2013 leave your job title at home, your ideas give you legitimacy. The one exception was a recurring question I heard: \u201cAre there any doctors in the room?\u201d I didn\u2019t mind at first, but the question grated after the third instance. Nobody ever asked if there were any nurses in the room, or any caregivers, or anyone currently going through a significant medical treatment. Nobody ever asked if there were any designers in the room, or any investors, or anyone who had an advanced degree of some other kind. We all play a role. Why the need to call out MDs?<\/p>\n

The pursuit of health, including the improvement of health care, is a mountain we are all climbing together. As my dad, a pretty serious hiker, always says, \u201cThe mountain doesn\u2019t care who you are.\u201d I felt like Health Foo was a 2-day climb of a pretty daunting mountain. Some keys to having a good time were: wear comfortable clothes, pace yourself, stop to enjoy the view every once in a while, and bring a buddy. My buddy was E-patient Dave, who stayed with me at my in-laws\u2019 house in Cambridge \u2013 our breakfasts on Saturday and Sunday at Simon\u2019s were among the best \u201csessions\u201d of the weekend. Side note: if you are ever near Harvard or Porter Sq, treat yourself: http:\/\/www.yelp.com\/biz\/simons-coffee-shop-cambridge<\/a> <\/strong><\/p>\n

(Lesson #8: Approach Health Foo \u2013 and maybe any conference \u2013 with humility, curiosity, and a sense of possibility. And wear good shoes.)<\/strong><\/p>\n

The next great session I attended was titled Google Health #Fail, led by Greg Biggers and Farzad Mostashari. It was a big, passionate group with lots of opinions on what went wrong, but Greg and Farzad did a masterful job of guiding us toward a discussion of what would make the next entrant get it right (\u201cit\u201d being personal health records or electronic medical records). Again, I listened more than I took notes, but hopefully someone else will write it up since it was a very good discussion. Here\u2019s what I jotted down:<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Google created a private record, which was off-mission for Google since they do a great job of connecting people and aggregating data.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 The ecosystem wasn\u2019t ready and Google got \u201cbig company disease\u201d so they bailed too early.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 There are no lightweight solutions for such a broken system.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 An EMR is the hardest problem to tackle and the least interesting for most consumers.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Google failed to make it easy for people to import data and use it.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Useful analytics, like Mint.com\u2019s, would have been a saving grace.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 A counterview: The minimal use case was compelling enough \u2013 an easy way to see last year\u2019s test results next to this year\u2019s. Just to see the data is enough for some people.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Outside the U.S., EMRs and health data tracking helps trigger vaccination reminders \u2013 another simple use case that is compelling to people.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Google was late or unable to get the developer community excited.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Companies need to come to the game with someone in mind, someone whose problem you want to solve.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 PatientsLikeMe\u2019s 4 keys: 1) the platform has to be awesome; 2) someone has to care about the individual; 3) understand what is meaningful about the problem being solved; 4) do research, help people take action.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 This space is not about apps. It\u2019s about a use case, a value proposition like \u201cthis will help you save money\u201d or \u201cthis will help avert disaster.\u201d<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 A successful future initiative would do well to focus on babies. Pregnancy and parenthood are gateway moments in people\u2019s lives.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Let the data flow and the technology will work itself out.<\/p>\n

Health Foo ended with a demo of some toys (literally). Jose Gomez-Marquez designs medical devices for the developing world. His lab creates DIY kits for people in the field to come up with their own solutions. http:\/\/iih.mit.edu<\/a><\/p>\n

Here\u2019s me holding a piece of Lego which serves as a platform for modular pieces that lock into place so clinicians in the field can create custom mechanisms in seconds that in the lab would take hours to create): http:\/\/instagr.am\/p\/H5D1F\/<\/a><\/p>\n

Jose hacked a toy helicopter to create a nebulizer. And the list goes on. It was a fun way to end the meeting.<\/p>\n

I ended up going for a walk around MIT with David Rosenman, Linda Avey, and Thomas Goetz, ending up at a bar to watch a few minutes of the women’s World Cup match between Japan and the U.S. We ran into Lucky Gunasekara, another Health Foo camper — another happy chance meeting since I hadn’t had the chance to talk with him during the event.<\/p>\n

Thomas, Linda & I grabbed a taxi to Logan Airport, newly armed with one chocolate bar each thanks to David.<\/p>\n

(Lesson #9: Keep the spirit of the event alive as long as you can.)<\/strong><\/p>\n

Anyone else want to add to this travelogue? Comments and questions welcome.
\n<\/strong><\/p>\n

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