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

“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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Ashish Jha at the Harvard School of Public Health is giving a Berkman lunch talk on “U.S. Healthcare: Can Information Drive Better Care?” [Note: I am typing quickly, getting things wrong, missing stuff…]

He says the first few minutes should leave us depressed about the state of health care in this country. A major problem underlying all this, he says, is a lack of transparency.

We spend $2.1 trillion dollars on health care in the U.S. in 2006. That’s about a sixth of the economy, about $7,000 per person (minimum wage is $11K/yr). It’ll be a fifth in the next decade. We spent a much bigger percentage of our GDP than other countries.

What do we get for this, Ashish asks. He cites a Rand study that came up with 439 “indicators of healthcare quality.” These are core, non-controversial treatments and practices. Rand found they get done about 54% of the time, suggesting “the care we get is pretty inadequate.” Even for privileged groups — e.g., white, wealthy, educated men — it doesn’t go much above 58%. “There’s a disconnect between what doctors think they do and what they actually do.” One of the listeners says that recent studies show that this is because there are typically 7 health care people involved with any one medicare patient, and they don’t get this done because they don’t know what others in the group are doing. “It’s completely about the system,” says Ashish.

He continues depressing us: About 10% of people admitted to hospitals suffer an injury there. One in four doctor visits lead to medication injury. (Ashish says he’s not confident in that study.) 44k-98k deaths come from medical errors.

His conclusion: The quality of care is unacceptable.

Why? 1. Because we pay for the quantity, not quality, of health care. 2. Care has gotten complex, but the health care systems haven’t kept up. 3. Little transparency. E.g., usually we don’t usually know how much our medical care actually costs (as opposed to what our co-pay is). We know how much health care for our pets costs, but not for our children. 4. No adequate feedback loop: Medical malpractice has been a failure and regulation sets the bar too low.

Ashish talks about one part of the response: The Ny State Cardiac Surgery reporting program. In the early 1990s, NY found huge disparities in cardiac surgery mortality across 31 hospitals: 1 in 200 dying vs. 1 in 14. So the state started publishing mortality info about every hospital and surgeon. As of about 2000, it’s all on the Internet. Over the course of 12 years, the rates dropped dramatically. Why? The market share of the hospitals didn’t change; the bad hospitals didn’t lose business. But the hospitals now had data that reinforced good practices. There’s anecdotal data that physicians began to learn from one another. Most dramatically, the rate of surgeons leaving their practices among the bottom fourth was way higher. Ashish’s project tracked them: Some quit, some moved. Even after adjusting for age, etc., people in the bottom quarter were 3x likely to quit.

People don’t check the ratings. Ashish thinks this is a place where the Internet could help.

90% of hospitals are still paper-based. Even those that are electronic can’t share info. The law says patients always have a right to get their records, but the doctor or the hospital owns the record. Patients can view it but it’s not in exportable, shareable form. (There’s a discussion about the state of electronic health records and why it’s a more complex problem than it seems.)

Ashish says that the HQA initiative has hospitals reporting on 23 quality indicators, and performance has improved steadily. HCAHPS makes patient experience data available.

Gene Koo: Health care decisions aren’t made by purely rational agents. All sorts of quirks come into it. So, how does the transparency of info help us?
A: Maybe consumer involvement in health care won’t work out. I’m looking for empirical data.

Q: What’s the role of the consumer in this? Are there data now that consumers are taking on more of the responsibility for their health care?,br>
A: People on the right say that consumers aren’t behaving like consumers because they don’t have any skin in the game. You don’t know how much things cost. So, we need transparency (they say), linked to having skin in the game (i.e., you pay for visits out of your pocket). But, few have high deductible health plans. My personal feeling (says Ashish) is that this isn’t going to be big. People are generally in them not because they want to be involved but because the plans are cheap.

Rob Faris: There’s a huge role for intermediaries. Intermediation is not working well right now. We need intermediaries who looks at outcomes and figures out what works and what doesn’t. And I’d like to see how quality considerations can be inserted into this.
A: We’re at the beginning of a very interesting journey. If someone like you can’t navigate the health care system…

Q: What do you think of the candidates’ positions?
A: They all talk about the uninsured, which is just one part of a complicated set of issues. We have 47M uninsured because health care is expensive. Most of the health experts I talk with think Clinton’s health plan is a little more realistic. But all of this falls apart if we can’t get a grip on healthcare costs. They’re rising at twice the rate of inflation, and neither Obama nor Clinton have gotten serious about healthcare costs.

Q: (me) How do you contain costs?
A: Electronic records would help. Payers should pay more for outcomes not for particular tests, etc. And there;s a whole “comparative effectiveness” movement. E.g., what do you do for someone with low back pain? You get different treatments based on locality. Payers should start taking more of an active role. But payers have not wanted to take up that responsibility.

A (person in the audience): Part of the answer is that the amt of money spent in the last 6 months of life is shockingly high. We should spend more earlier on preventative measures.

Ashish: You don’t always know when the 6 months are. And there’s a huge issue around managing expectations at the end of life. Plus, when someone else is paying…From a policy point of view, it’s very hard to fix this stuff. Even though health reform comes up every five years, it doesn’t get done because the status quo is everyone’s second choice. [Tags: berkman healthcare health ashish_jha ]

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