Participatory Medicine: new health insights from patient generated data

Click here to watch this talk

I was recently at the Mayo Clinic Transforming Healthcare Symposium to give a talk on how Self-Tracking will change the future of health. Here is an overview of the talk, as well as slides and video… Read the rest of this entry »

This week I got to attend the Institute for the Future (IFTF)’s Health Horizons Conference in San Jose. Kathi Vian invited me to join her wonderful panel on Building the Health Commons, along with Tori Tuncan of Lend4Health and Dr. Kelly Travers of MD Health Evolution. My slides on “Patient-generated data” are below, although I’m not sure they stand alone without me talking through them.

The trends and forecasts presented by IFTF for what healthcare will look like in 2020 were striking, inspiring, and cautionary. 100 people from all manner of health-focused organizations were there, sharing ideas and brainstorming “if only…” scenarios in Open Space sessions.

2020 Forecasts

Since the meeting was for IFTF clients, I’m not allowed to get into too many details, but I can talk about general trends. The most interesting trends for me had to do with the increasing role of commons in healthcare, the seamless and ubiquitous presence of sensors and health-related technology, and the challenges of making information actionable.

Video scenarios were presented for both positive and negative possible futures. Ted Eytan did a very cool presentation on kp.org, which has demonstrated amazing adoption. Bob Johansen talked about Ten New Leadership Skills for an Uncertain World. And around the room, I heard a lot of talk about Diabetes in particular, and incentives in general for how to encourage people to make positive changes for their health.

Quantified Selves

In the “if only we were all quantified selves…” open space session I led, people asked a lot of questions about what to track and what can be learned from tracking. The conversation wandered from epigenetics and Bayesian statistics to garbology (studying people’s garbage to see if they’re tracking truthfully) and gratitude.

One thing that surprised me was a question about how to track “being present” and how to measure the effect of “giving” behavior in your life. Applying quantitative principles to qualitative or spiritual behaviors and states would be an interesting study. Someone also suggested having the Quantified Self group agree to a collective experiment where we all track a particular thing for a defined period of time and compare our results – great idea!

We talked about what would happen if everyone had their genetic, health, and lifestyle data pooled together in a big open commons. While the challenges would be privacy, security, and effective analysis, the potential is to cure disease, understand behavior, and effect positive change for individual and collective health.

Now that’s an exciting future.

Last week Daniel did a live podcast interview with John Mack for the Pharma Marketing Blog. He talks about how CureTogether got started and what patients are discovering on the site. Here’s the streaming audio below (about 15 minutes long).

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At long last, we’re releasing recent videos of both of us speaking at the Quantified Self meetups.

Daniel gives a quick, early overview of CureTogether from December 2008, and Alexandra talks about who to trust for health information in March 2009.

Enjoy!

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Alexandra Carmichael on trust and health information sources from Kevin Kelly on Vimeo.

The second video in a series of two famous buddies discussing random things, in the clip below Tim and Kevin talk about music, open source clinical trials, CureTogether (about half way through), and their favorite knives. The open source health discussion is impressive, the rest is good fun. And check out Tim’s shoes!

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Random Episode Numero 2 from Glenn McElhose on Vimeo.

- @Doctor_V: Examples of how curetogether has sped the research cycle for migraine?? If not, how would it??
- @accarmichael: @Doctor_V Research questions curetogether has opened up so far have been in comorbidities – what conditions occur with migraine?
- @Doctor_V: @accarmichael responded immediately to my question…thanks Alexandra
- @accarmichael: @Doctor_V You’re welcome! Thanks for the question

So Twitter is really an immediate, personal way of interacting with the community
of people you’re trying to reach with your message.

A great analysis of all the Health 2.0 Tweets was put together by Chris Hogg (@cwhogg).
He assembled his findings into a very cool slide presentation, below. Look for CureTogether
on slides 16 and 17.

How have you used Twitter to spread your message?
Are you inspired to give it a try?