The Lybbaverse / susannah-fox  

What if healthcare…?


How would you like to improve our healthcare system? Susannah Fox of the Pew Internet & American Life Project has created a place where you can share your ideas. Add your voice to the conversation, and be part of the growing movement to reform our healthcare system. 
Check out Susannah Fox’s Storify page and tweet your “what if” using hashtag #whatifhc
Photo Credit: Jasleen_Kaur

The pivot or the catapult – be ready for either at FooCamp (and in life)


What: 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.

Who: The O’Reilly 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].

Where: Microsoft’s NERD Center 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 – look sharp!).

When: The sessions didn’t 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 three hours for cocktails and dinner, and two  hours for breakfast).

Lesson #1: Follow Linda Stone anywhere she’s going – or latch onto someone else who is saying “trust me, this person is amazing.”

For the second session, I followed my instincts up a winding staircase to the Treehouse, a cozy, circular space meant to hold eight people. A dozen were already inside but I squeezed in and sat on the floor, just in time to hear Eduardo Jezeirski say “nothing I build is half as good or useful as what people in the community could design.” The session was about sparking local innovation in developing countries.

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 – 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.

I was so out of my depth in this session that I can’t do justice to most of the rest of the conversation among people like Aman Bhandari of HHS and Meg Wirth of 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 – if none were taken, the local NGO can get in touch with the person to be sure the knee is still working and they’re OK. It’s Quantified Self for appliance maintenance, not personal fitness. And it removes the record-keeping burden from the shoulders of the clinic workers, who couldn’t possibly keep track of each prosthetic’s status.

It was an amazing session in which I stretched my mind, yet felt physically cozy, listening to quiet voices – not presentation-volume.

Lesson #2: Pick some sessions about which you know nothing. Lesson #3: Architecture can have a significant effect on the experience of a meeting.

For the third session I was intrigued by the simplest post-it – something about building a human phenotype, plus a sketch of cut-out paper dolls. Spoiler alert: it was AWESOME.

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

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’s the quickest way to understand what it is about:

I can’t 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?" 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.

I could spend hours on the site answering questions and thinking of questions I’d like to ask. As I told Zack, I haven’t been this scared and inspired since a Procter & Gamble executive said they no longer spend money on surveys or focus groups. Instead, they “listen more than ask” and monitor the social stream. Survey researchers, get ready to re-tool.

Lesson #4: Go into any room where Tim O’Reilly, Steve Downs, Gilles Frydman and Farzad Mostashari are leaning forward in their chairs.

Update: Since the above lesson is not, um, widely applicable, here’s an alternative: Design research that invites participation from your target group.

At lunchtime, I grabbed a sandwich and sought out a group of people I didn’t 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 three musicians, three dancers, and a snowmobiler!

Lesson #5: Honor what Sara Winge said at the start of Health Foo: “You are here, not because of your job, but because of who you are” – and talk to strangers.

As I wrote earlier, I convinced Ron and Jon to switch our session to Sunday morning so I could participate in Abbe Don’s two-hour IDEO process demo – 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.

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 – 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 – that IDEO asks “HMW” questions to help prompt new thinking: “How Might We…” 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 time brainstorming and then cutting, pasting, taping, and drawing our way to complete “The Goalposts of Life” – a representation of three lives, the grandfather’s cut short by a heart attack (with pictures of what he left unfinished), the father’s (with pictures of his new healthy lifestyle and longer life goals), and the son’s (all the dreams he has for the future).

Lesson #6: Go into any room where arts and crafts materials are laid out.

Saturday evening featured Ignite speeches – 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.

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 – probably about 20 people in a small meeting room so it had an intimate atmosphere. Since I helped lead the discussion I didn’t 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).

Here’s the gist of what I said:

A majority of U.S. adults are online, have a cellphone, 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.

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?

My take-away was that I am on the right track, focusing on this phenomenon of peer-to-peer health.

Lesson #7: Be brave. Everyone is there to contribute and even nurture, so put your ideas on the table.

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

It also struck me that the DIY aspect of an unconference creates a start-up feel – leave your job title at home, your ideas give you legitimacy. The one exception was a recurring question I heard: “Are there any doctors in the room?” I didn’t 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?

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, “The mountain doesn’t care who you are.” I felt like Health Foo was a two-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’ house in Cambridge – our breakfasts on Saturday and Sunday at Simon’s were among the best “sessions” of the weekend. 

Lesson #8: Approach Health Foo – and maybe any conference – with humility, curiosity, and a sense of possibility. And wear good shoes.

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 (“it” 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’s what I jotted down:

-          Google created a private record, which was off-mission for Google since they do a great job of connecting people and aggregating data.

-          The ecosystem wasn’t ready and Google got “big company disease” so they bailed too early.

-          There are no lightweight solutions for such a broken system.

-          An EMR is the hardest problem to tackle and the least interesting for most consumers.

-          Google failed to make it easy for people to import data and use it.

-          Useful analytics, like’s, would have been a saving grace.

-          A counterview: The minimal use case was compelling enough – an easy way to see last year’s test results next to this year’s. Just to see the data is enough for some people.

-          Outside the U.S., EMRs and health data tracking helps trigger vaccination reminders – another simple use case that is compelling to people.

-          Google was late or unable to get the developer community excited.

-          Companies need to come to the game with someone in mind, someone whose problem you want to solve.

-          PatientsLikeMe’s four 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.

-          This space is not about apps. It’s about a use case, a value proposition like “this will help you save money” or “this will help avert disaster.”

-          A successful future initiative would do well to focus on babies. Pregnancy and parenthood are gateway moments in people’s lives.

-          Let the data flow and the technology will work itself out.

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. Jose hacked a toy helicopter to create a nebulizer. And the list goes on. It was a fun way to end the meeting. 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.

Thomas, Linda, and I grabbed a taxi to Logan Airport, newly armed with one chocolate bar each thanks to David.

Lesson #9: Keep the spirit of the event alive as long as you can.

Anyone else want to add to this travelogue? Comments welcome.

Read more insights from Susannah Fox at Pew Research.