So when Jen McCabe described Health Month, I was intrigued. It’s a game in which you choose the rules for behavior change — from their list or of your own making. You can choose to be social — or keep quiet. And after a month you’ve formed a new habit — or cut bait.

I jumped in for June, choosing 3 rules that would help me with a few “do more” goals: run, stretch, and eat greens.

The first inkling that I might like this experience was the pledge, which reminded me of the Vow of Heroism that you have to recite when you buy an item at the Brooklyn Superhero Supply Co.

Here’s the Health Month version:

I have chosen these rules in the hopes that I might slowly begin to live a healthier life, and enjoy the process.

If I succeed at following these rules for a full month without running out of life points (I will start with 10 and lose 1 every time I break a rule), I understand that my name will be added to the Wall of Awesomeness. But if I run out of life points, I also accept that my name will be added to the Wall of Almost-But-Not-Quite Awesome.

“Well, I’m TOTALLY going to be on the Wall of Awesomeness,” I said to myself. “Nobody puts baby in a corner.”

I found myself checking in every day, feeling a little rush of satisfaction when I punched in the miles for each run since I was really pushing myself on that rule. My family got used to me talking about my Health Month check-ins, just as they got used to the oven timer being used for my #getupandmove challenges (for months last year my little one thought that every “ding!” meant I was doing push ups).

So how’d I do?

The whimsical prompts and encouragements worked for me, but I was a little shy about joining a team or being active on the Game Wall. I went running, even when I didn’t feel like it, because I wanted to meet my goal. I also made time to stretch, which felt great. And I’ve never eaten so much spinach in my salads as I have this month.

In the end, I met all my goals for two of the weeks and nearly all for the other two. I’m really proud of how I did and that’s driving me forward to take on new goals. I think my name is on the Wall of Awesomeness, but to be honest, I don’t have time to search for it. And as competitive as I am, I was cut to the quick when I missed my running goal by just 2 miles last week. The verdict: “That was an indulgence.” Ouch. And um, no. Eating an entire baguette slathered in Nutella is an indulgence.

For more on health gaming, check out:

Games for Health

Keas: The New Game That Has Officemates Battling Each Other To Get Healthier

imoveyou.com

Health Month (jump in for July! And if you do, let me know — maybe we can form a team)

Any other suggestions? Leave them in the comments, please.



This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the funding and the stakeholders to create a significant new cancer organization in the Netherlands.

As I did my best to serve up relevant insights from my research, I kept wishing I could just replay the Patients and Online Communities panel at Health 2.0 Paris. And now I can:

If you don’t want to watch all 70 minutes, you can skip ahead pretty easily once the video starts to load.

My remarks start about 3 minutes in (here’s my earlier post about what I said) and we begin discussing participatory medicine at about minute 10. The conversation takes off from there.

Roberto Ascione of paginemediche.it tells why his site is a meeting ground for doctors and patients. “There is no one recipe to Health 2.0… this is an empowerment of the physician-patient relationship which is the foundation of good health care.”

Jamie Heywood describes why PatientsLikeMe — founded with a goal of drug discovery — is data-driven and why patient communities shouldn’t “lose the narrative, but encode the narrative.”

Gilles Frydman then talks about how ACOR is “all about the narratives” of the 650,000 people who have used it.  He mentions The Moment when a patient realizes that they must participate in their care, when they realize that every cancer patient is “going through a clinical trial with an N of 1.” As he says, “Cancer is the opposite of algorithmic medicine. It is the opposite of having high blood pressure” (and therefore individual stories are so important).

At about minute 21 (if you want to skip ahead), Christian Angele of imedo.de, talks about how his site provides a forum for people to create a community around their own perspectives and experiences as a patient — personal stories that generate discussion.

Neil Bacon of iWantGreatCare.org states that community self-reporting is key to measuring clinical outcomes. In fact, he says, patient satisfaction is as important a measure as “hard” clinical metrics, such as infection rates.

You get the idea (and I haven’t even addressed the excellent demos and Alex Schachinger’s remarks).

What I want to ask is: Which way forward for patient communities?

For example, can we construct a decision tree for an organization starting a community?

• What are the organization’s goals? Emotional support? Symptom tracking? Drug discovery?
• What condition or disease are you tackling?
• What country or region will you recruit from? (Gilles suggested, at one point in the discussion, that patient engagement is more necessary in the U.S. than in Europe because of the significant differences in care delivery. Alex Schachinger suggested that Germans and Americans have different concerns and sensibilities about online communities.)
• Does the organization have the resources to “go heavy” and create a complex database-driven site, or will it need to “go light” and stick with simple discussion forums?
• What are the resources of the people you hope to attract to the community? Do they have stable broadband access? Or do they rely on a mobile device for connectivity?

Would the decision tree look different for patients trying to decide which community to join?

• Is your condition rare or relatively common?
• Do you want join a local group, to meet people in your area?
• Do you want to cast your net wide and get international perspectives?
• Are you a Quantified Self-type symptom-tracker looking for tools?
• Are you looking for emotional support and personal connections?
• What kind of personal information are you willing to share online?
• How tech-savvy are you? Related: What kind of internet connection do you have?

What questions should we add to these lists? What other issues come up when patients gather online, either in small, ad hoc groups or large, organized communities?

Note: If you paused the video, skip ahead to the closing statements from each panelist — they are pretty fantastic (minute 63).

“Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to demand our information.”

“When people take a participatory role in their health, we see improved outcomes.”

These are just  a few of the insights you’ll hear if you listen to the full audio track of my conversation with Thomas Goetz, author of The Decision Tree:

However, if you can’t spare the whole hour and 15 minutes, you can just dip in to the #decisiontree stream:

Leroy Jones captured the audio for our exchange about family history, genetics, disparities, and how wireless access is transforming our understanding of the “digital divide.”

Mark Scrimshire wrote a very good, short summary of the event as well as a follow-up post, Should patients have access to their data?

Mary Fletcher Jones created a video excerpt, in which Thomas commiserates with me about how depressing data about chronic disease can be, but how, on the flip side, it is inspiring the see the possibilities of open sharing such as on CureTogether and PatientsLikeMe:

I loved seeing all the tweets during and after the event, including one from Alan Viars affirming Thomas’s assertion that pregnant women are natural Quantified Selfers — he had no idea that his own wife has been keeping a symptom-tracking spreadsheet!

For those who were there, or tracking the tweets, what has stuck with you?  What other questions do you have for Thomas or for me?

Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking root: clear labeling on drugs & food, passive tracking of our exercise routines, open access to our health data.

There are enough lessons for self-improvement in the book that I found myself comparing it to What to Expect When You’re Expecting, but since Goetz focuses on the big picture (prevention, diagnosis, disease management) it is more like What to Expect When You’re Expecting a Long Life.

Unlike the pregnancy bible I read 10 years ago (and more than once threw across the room), Goetz doesn’t preach from a lofty whole-grain pulpit. He  doesn’t think we should ask people to do more, nor should we scold people for every mistake they have made, but rather we should give them tools to make better health choices.

For me, it sparked a renewed interest in tracking my own health. I’m not going all Quantified Self yet, but I am interested in a few key variables, like how far I run, my weight, and my cholesterol levels. And yep, I’m just writing things down, as Amy Tenderich recently wrote. That’s participatory medicine, too.

Readers of this blog are probably familiar with many of the companies and studies Goetz profiles in the book: the Framingham Heart Study, CureTogether, PatientsLikeMe, Nike+, 23andMe. I learned new things about each one and now have better talking points when I’m explaining Health 2.0 to newcomers. In fact, I got the feeling that this was a reason why Goetz wrote the book: for all those public-health nerds and personalized-medicine geeks who wish they could explain to people why it is just so awesome that we can calculate our risk for heart disease or cancer. You know how MDs are always asked for cocktail-party diagnoses? This book is for all the MPHs who stood nearby wishing that someone would ask them for on-the-spot health advice.

If I’ve sparked your interest in the book, check out the following:

Brian Ahier’s review: Data not drugs

Kent Bottles’s review: Check Lists & Decision Trees v. Spontaneity & Imagination

Short video introduction: The Argument for Better Health, in 3 Minutes & 53 Seconds