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[defrag] Esther Dyson on personal health data

Esther Dyson is giving a talk at Defrag. It’s called “On exploration … of yourself.”

NOTE: Live-blogging. Getting things wrong. Missing points. Omitting key information. Introducing A LOT of artificial choppiness. Over-emphasizing small matters. Paraphrasing badly. Not running a spellpchecker. Mangling other people’s ideas and words. You are warned, people.

“Everyone wants to know themselves, but some people are afraid of their genome.” She tells such people that the question is not what you’re going to die of, but what you’re going to live with. She wants to show us some cool interfaces that make data about yourself more interesting.

23andme.com (Esther discloses that she’s on the board) shows you your disease risks [based on your genome?]. It presents some friendly screens and lets you drill down. You can compare your genome to your relatives’. Esther says she found a lump in her breast this summer. It was benign, but before she found out, she reassessed her odds, which led her to think that the risk of going into space had dropped in comparison to the cancer risk. We need numeracy, she says.

Keas.com also produces a friendly health profile, she says.

But what counts is motivation, she says. It’d be helpful if we could increase the status of health markers, e.g., that you run 20 miles a week, etc. How do you design systems, services and tools where your healthy behavior connotes status?

She points to one not very effective attempt: TripIt.com shows her status in various frequent flyer programs, but ought to show her good behaviors (exercise, flossing, etc.).

She suggest someone here create the game Bodyville.com.

There are three health markets now: The health care market (doctors, hospitals, insurance, etc.). Chocolate muffins, and indolence. And the third market is for health, which hasn’t been much of a market.

Q: How about privacy?
A: With universal healthcare, the data have less of an impact. The data can still affect employability, etc. Privacy remains an issue, although your financial data is much more interesting to thieves. We’ve managed to deal with financial data pretty well. If you’re worried about your health data’s privacy, then don’t use this stuff. It’s somewhat overblown as an issue. I’ve put my entire genome up on the Web — 20Mb, and it doesn’t have a lot of meaning about it yet. Your behavior is much more revealing than your genome right now.

Q: How about data sharing tools?
A: Here are two I’ve invested in: Contagion Health. Health Rally. Suppose your friends invest in your not smoking? That creates a positive community and you don’t want to disappopint them. Med Rewards. PatientsLikeMe and CuredTogether.

Q: There can be unintended consequences, such as BMW’s mileage game leading people to run red lights. How do you avoid that?
A: Yes, I can see one of those tools aggravating anorexia. This things need to be designed carefully.

Q: Are you going into space?
A: Yes, I’d love to. I’d even go to Mars one way. That’s what they did to America in 1942. The older you get, the less you have to lose.

Q: How about how humans take to 3D visualizations?
A: Some like it, some don’t. I do. I love 4D with things changing over time. But not everyone likes them. Remember not to confused the visualization with the meaning. Some are cool but don’t convey any info. Read Tufte.

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