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Letters to health-care Santa: Free our data!

6a00d8341c909d53ef01156e5b9eae970c-800wi.jpgOver the course of this week, I'll be asking some health-care experts what they'd like Santa to add to the bill during conference committee, and publishing their responses on the blog. Our next contestant is Matthew Holt, health-care research, forecaster, and strategist with a particular focus on information technology. He's the co-founder of the annual Health 2.0 conference and the found of The Health Care Blog.

First, as Tim Berners-Lee says, "free our data." Just down the street from Ezra's office is a memorial mural painted by Regina Holliday whose husband Fred and data was trapped in a hospital while he was dying. The hospital wanted 73 cents a page to copy and release the data when he moved to a different facility. That's beyond a disgrace.

For the past 20 years other industries have been transformed by the ability of enthusiastic amateurs to use their own data and easy tools to totally transform and improve the consumer experience. There are hundreds of thousands of patients who would lead this revolution, if they could only break down the walls to their own data. These walls have been thrown up by providers, health insurers, labs, even the government--which has resisted the release of Medicare's data on what it (i.e. we) pays physicians. There's even an incipient movement, which is asking for just a copy of electronic data to be made freely available where it exists. But that's not enough. We need health care organizations to be transparent in their practices and for patients to have full access to their data as a matter of course. One little amendment in conference could get us there.

Second, we need to make insurers responsible. We're about to hand them 30 million more customers and $90 billion a year (give or take) in public subsidies, and all we've asked so far is that they don't be evil and keep the recissions and cancellations off the funny pages.

That's not enough. They need to actually be good. That means good as in insurers promoting health amongst their members in order that the taxpayer gets a return for letting them stay in business. There is lots insurers can do. Now there are no pre-existing conditions, insurers can collect and report accurately about their members' health. We also know that those few insurers (and integrated provider systems) who manage chronically ill patients well have better health outcomes at a lower cost. We also know that everyone, from the healthy to the pre-chronically ill to those with disease can be motivated by a variety of nudging, encouragement, and education (all now aided by technology) to be more engaged in their own health and have better outcomes. We also know that many patients end up getting unnecessary care that doesn't help them and hurts the overall economy. Insurers have basically stood idly by while all this has gone on. In my second amendment to HCR from Santa, insurers should now be tasked with making sure that positive outcomes happen. And a new government czar, armed with a very big stick, should be in charge of making sure that they're doing the right thing.

Earlier in this series, Diane Archer called for Congress to create national exchanges rather than state exchanges, Alain Enthoven offered some ideas for how to fix the exchanges, David Cutler proposed a soda tax, Austin Frakt argued for competition in the Medicare Advantage program, Jacob Hacker broached letting the public sector help the private sector negotiate lower rates, George Halvorson tried to expand the exchanges to include providers of actual care rather than just insurance coverage, Henry Aaron wants the death panels back, Jon Gruber wants the House's definition of decent insurance coverage to prevail, Victor Fuchs would like to turn the exchanges over to Ron Wyden, and Harold Pollack thinks it's time to cut the waiting period for the disabled.

By Ezra Klein  |  December 23, 2009; 3:00 PM ET
Categories:  Health Reform  
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Next: The media's Sarah Palin problem -- and ours


I believe in the "free our data" as an absolutely critical part to advancing lower-cost, high-quality health care.

I'd suggest the more constructive approach would be to amend the $50 billion in health IT funds from the stimulus to be used solely on technologies that acquire a copy of medical data that is then consolidated and anonymized for public use. Health IT vendors should be putting this capability into place for all EHR systems that are sold using this stimulus/health IT money.

Posted by: wisewon | December 23, 2009 3:35 PM | Report abuse

Matthew, I am completely, strongly in support of these proposals. However, in order to hold insurers accountable for health improvements they need to be able to do two big things. First, create sophisticated wellness programs for members that are part of (cause and/or effect) a larger cultural change towards wellness, primarily better nutrition and physical activity. these programs will need some motivational force, which probably has to be money. Right now as you know insurers rarely provide that money because their members tend to change companies every five years so most of the benefit of wellness is lost. Also, wellness works best when it comes from the employer not the insurer alone. large self-insuring employers already get it for the most part, but the 50% of the market that is fully insured (mid, small group and individual) doesn't get it for the most part and it is hard to make them a partner in wellness. Government still needs to play an enabling role.

The second big thing is improving clinical outcomes. To do that, they need a lot of help. They need to be freed to motivate and organize, support and punish providers to get them to improve the quality (and efficiency) of care. Right now, the backlash is still very strong from providers and they easily get the public on their side in fights over interference in the practice of medicine. Attitudes are slowly changing and insurers need to be pushing for this change to continue, but is swimming upstream at the moment.

Posted by: jdhalv | December 23, 2009 7:10 PM | Report abuse

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