Just back from the Health Datapalooza confab that took place last week – an event now in its 4th year hosted by the federal government. I had a few lingering thoughts to share. First, on the event name: I’m guessing it came out of my old business partner and current national CTO Todd Park’s experience in Washington, where trying to get any single distinct thought through “the interests” could knock the “palooza” out of a grown stallion.
You’d think the federal government would be the last ones to host a Datapalooza, but the fact is NO ONE ELSE has stepped up!
So they did.
And complain as I might about the G-men and G-women being industry conference conveners (makes me want to bathe with a wire brush) they pulled it off pretty darn well. The Department of Health & Human Services (HHS) attracted hundreds of serious entrepreneurs… and hundreds more wannabes (who real entrepreneurs desperately need in order to feel cool).
And boy were there some great bloopers…
Kaiser came blistering onto the scene with an open API—to the location and hours of operation of its facilities! Kinda sounds like Yelp to me…I’d be surprised if developers will come a runnin’ to that one. Kaiser’s CIO (a very cool guy whom they or anyone in health care would be lucky to get) broke this news in a two-minute keynote speech. Imagine President Obama announcing, in a State of the Union address, that the green vegetables in the White House cafeteria were now much crunchier!
HHS Secretary Kathleen Sebelius applied similarly excessive fanfare announcing the release of cost data for 30 ambulatory procedures. The whole idea that Toddy (Park) was trying to get going with this Palooza was not to release REPORTS on things but to release the SOURCE data so that anyone with proper security and privacy clearance could INVENT a million reports that no one had ever conceived before!
So here are my thoughts on all of this, some of which I shared at the conference in my way-longer-than-two-minute keynote:
1. Release the data!! Secretary Sebelius announcing the release of cost data for 30 ambulatory procedures during her keynote felt like the Secretary of Energy serving up a can of 10W30 to oil companies to drill into.
Her words were great. To wit: “The fact that this [unlocking the data] is growing by leaps and bounds is a good indication that we can leapfrog over years and decades of inaction into an exciting new future.” YES! GO GIRRRL! OK, so…where’s the data?
Uwe Reinhardt said it perfectly in a Tuesday plenary but I can only paraphrase his point: “health information is a public good that brings more wealth the more people use it.” Or, as Doc Searls puts it: personal data is worth more the more it is used. Datapalooza is certainly the largest meeting of the year focused on health data, and our Health and Human Services data liberation army was in full regalia. My assessment is: so far, so good but, as always, each data liberation maneuver also reveals the next fortified position just ahead. This post will highlight reciprocity as a new challenge to the data economy.
The economic value of health data is immense. Without our data it’s simply impossible to independently measure quality, get independent second opinions or control family health expenses. The US is wasting $750 Billion per year on health care which boils down to $3,000 per year that each man, woman and child is flushing down the drain.
Data liberation is a battle in the cloud and on the ground. In the cloud, we have waves of data releases from massive federal data arsenals. These are the essential roadmap or graph to guide our health policy decisions. I will say no more about this because I expect Fred Trotter (who is doing an amazing job of leading in this space) will cover the anonymous and statistical aspects of the data economy. Data in the cloud provides the basis for clinical decision support.
An unfathomably complex entity such as a health system grows over time like a city. Right now, communications and data usage in the US healthcare system is a bit like a medieval town, with new streets and squares popping up in unpredictable places and no clear paths between them. Growth in health information has accelerated tremendously over the past few years with the popularity of big data generally, and we are still erecting structures wherever seems convenient, without building codes.
In some cities, as growth reaches the breaking point, commissioners step in. Neighborhoods are razed, conduits are laid in the ground for electricity and plumbing, and magnificent new palaces take the place of the old slums. But our health infomation system lacks its Baron Haussmann. The only force that could seize that role–the Office ofthe National Coordinator–has been slow to impose order, even as it funds the creation of open standards. Today, however, we celebrate growth and imagine a future of ordered data.
The health data forum that started today (Health Datapalooza IV) celebrated all the achievements across government and industry in creating, using, and sharing health data.
Useful data, but not always usable
I came here asking two essential questions of people I met: “What data sources do you find most useful now?” and “What data is missing that you wish you had?” The answer to first can be found at a wonderful Health Data All-Stars site maintained by the Health Data Consortium,which is running the palooza.
The choices on this site include a lot of data from the Department of Health and Human Services, also available on their ground-breaking HealthData.gov site, but also a number of data sets from other places. The advantage of the All-Stars site is that it features just a few (fifty) sites that got high marks from a survey conducted among a wide range of data users, including government agencies, research facilities, and health care advocates. Continue reading…
It’s a busy time in Washington, DC. June 3 marks the Datapalooza and begins a week of cheering and reflection on the success of federal initiatives designed to improve health while reducing cost. This year, the big claim is “information following patients” – a combination of federal Stage 2 Meaningful Use regulations, federal Health Information Exchange guidelines and federal open pricing data policies. We’re surely beyond 1,000 pages of federal initiatives around health data and the policy fog seems to be getting thicker every day. The Independent Purchase Decision Support Test is my beacon for whether we’re headed in the right direction.
Here’s a quote from the Meaningful Use Implementation Guidelines to Assure Security and Interoperability just released by ONC:
“In effect, HISPs are creating “islands of automation using a common standard.” This will hamper information following patients where they seek care―including across organizational and vendor boundaries―to support care coordination and Meaningful Use Stage 2 requirements.”
How will “information following patients” improve health while reducing cost?
It all depends on where the patient goes to get what. Not surprisingly, federal Accountable Care Organizations and related accountable quality contracts with private payers are exactly about where the patient goes too. The difference between these health reform innovations and the old managed care approach is supposed to be the patient’s ability to choose where to go for a healthcare service. Will Stage 2 and the new federal health information exchange implementation guidelines actually lead to effective patient engagement or is it time to “reboot” the HITECH incentives as some have suggested?
The Independent Purchase Decision Support Test cuts through the techno-jargon and paternalistic framing and goes straight to the heart of the policies that influence the physician-patient decisions to drive health care quality and cost. This the essence of patient engagement and the place where the money in healthcare is actually spent.