Why We Need an Independent Health Data Utility

June 28, 2022 - By Matthew Holt

This is another in the numerous “death of Google Health” stories that have been appearing since Friday when the Google blog announced the pulling of the plug. I must admit to being more than a little pissed off with Larry Page or whomever it was within Google that made the decision. After all, Google Health was only introduced a tad more than 3 years ago (premiered at HIMSS in Feb 2008; launched officially later that year). And just nine months ago they hired a new product manager and debuted some interesting new features connecting to the new wave of personal sensors.  I know that Wall Street has been telling Google to focus on fewer products and that Page as new CEO has decided to do that but for a company as rich as Google the effort involved in keeping Google Health alive would be trivial. And props here to our friends at Microsoft who are integrating HealthVault into their wider health care business.

The sunsetting of Google Health has meant an outpouring of articles from the factual (Deb Linton at Health 2.0 News), to the historical (John Moore at Chilmark) to the winners/losers assessment (Fred Trotter) to the mega-quotes including mine (Marshall Kirkpatrick at ReadWriteWeb). There’s also been a steady stream of both sad and (sadly) happy people commenting on the Society for Participatory Medicine listserv, and Mr HISTalk was his cynical self–basically saying that tech know-nothings should stay out of our complicated health care business. He’s wrong and now Google is wrong, and here’s why.

With the very notable exception of HealthVault and (hopefully) some new innovation from Dossia, we are now dependent on a number of small companies to maintain the emerging data utility layer. The data utility layer in health is the place that is going to collectively store all the data that is being generated. Apparently Google didn’t have the real patience for two rapid developments.

First, with a combination of the Direct Project and the stipulation in the meaningful use regulations that EHR users share data with other providers and with patients, individuals are going to find that more and more data about themselves is available and easily accessible. Whether or not it’s a Farmville-type hit, the ability to capture all that information in one place is very important. Currently it’s also very time consuming to put together so very few people do it. But I do know of instances where people have laboriously entered lab values into Google Health just to store them. Sooner rather than later that data will be available much more easily in machine readable format, and as those barriers to use fall so the desire to look at that data will increase.

Other than Kaiser members and veterans almost no one is in a health system that will capture even all their “medical” data for them. And even at Kaiser and the VA patients are basically beholden to the organization’s version of what they do or don’t need (with the Blue Button being an honorable exception) in terms of both data and the ability to analyze and play with it.

But most Americans aren’t in KP or the VA. It’s much more realistic that a typical American will be using multiple providers. My own family of three has three different main care providers (one Ob-Gyn, one PCP, one Pediatrician) in three different organizations-none of which share electronic data about us. And we don’t even use specialists much! However, in order to get the meaningful use dollars those organizations are going to have to free the data and allow patients to take a copy (the original idea behind healthdatarights.org).

Don’t think that–even if they’re successful–HIEs and meaningful use requirements are going to get all this data in one place. Direct won’t do that either, although it should make it much easier for providers to share data with each other. But we know provider organizations won’t take the lead. And health insurers?  They can’t even present the data they ought to have to members now. I’m in an HMO for Anthem Blue Cross and their “360″ view doesn’t think I’ve visited a doctor in two years because the claims are run through an IPA and Anthem doesn’t see them. But there is going to be much more data to come and many more people are going to be interested in storing it somewhere.

That may not mean weekly interactions with that data–that’s not the way most health care interactions happen. Most health care interactions are transactional (appointments, refill requests, lab values, et al) and the big health care players more or less stopped the Googles of the world from providing those services–although via its MedFusion purchase Intuit and some others are now linking EHRs to those features. But lack of regular interaction with that data doesn’t mean that aggregation of that data for patients is not very important. I don’t look at my previous tax returns, but I sure as hell will if I get audited. And I want my health care data available when I need it too.

Second, there’s about to be a big uptick in sensors automatically tracking sleep, calories burned, weight, pills taken, etc, etc with no need for manual data entry from the individual. I think this is going to revolutionize how people behave. We’re in a long term cultural shift but, just like Prius drivers paying more attention to the miles per gallon meter than traffic lights, we’re all going to be looking more and more at indicators and incorporating them in our feedback loops. (Here’s Thomas Goetz’s great article about it). Already the folks at RunKeeper are incorporating data from multiple devices and Healthvault does the same thing. (BTW Runkeeper tongue in cheek claims to be ready for prime time but it’s not quite on the health data side!).

Here again we haven’t quite figured out how to incorporate different data streams with each other–who knows what the impact of running on sleep is? And we don’t have any good way of tracking it against health yet–but isn’t it a better than even bet that we will learn something when all that data is being collected and integrated at just a slightly greater level than it is happening now? After all, Runkeeper has 6 million downloads and Zeo already has more data than all sleep labs combined.

I can’t tell you the true  potential for improvement in human welfare that can come from this, but I can tell you that we’re at the beginning not the end of a process. And given their huge resources I have no idea why Google wouldn’t just keep their Health data storage ticking over at a minimal level. Perhaps Larry Page could have taken fewer rides on his jet to compensate?

So what to do about the loss of a big player so soon after the game has started?

For now we’re going to have to depend on Microsoft more than is healthy, and we’re going to have to hope that the combination of smaller players and point solutions with open APIs will suffice. And maybe there is a viable play for a technology company finding a way to make this a viable independent business. But I think it’s too important for that. Eventually we’re going to have to depend on one of three solutions.

First, players in the current health care system could step up to the plate and provide a common utility for storage and data transfer. No, I’m not holding my breath either, but if they’re paid to do so and forced into it by regulation, it’s not impossible. After all that’s why they do everything else.

Second, the government could take this over. Yes, I don’t think this idea will survive Deb Peel either, but given that health data is by definition life-long and we don’t have much faith that tech companies or provider organizations will stay around in their current format, it’s a plausible possibility. After all they already have health data on millions of people–not to mention Social Security and who knows what else– and via Blue Button are making it available. Why couldn’t they create a storage layer too that we know will be there long term.

Third, couldn’t some major non-profit Foundation step up and provide this as a real public service? I know it seems far away, but in some ways this was the original idea behind Dossia? Rather than Google closing down Google Health could they give it (code & data) to an unimpeachable non-profit with enough money to keep it going for while? Other Foundations and the government could step in to fund it. I believe there’s already a strong group of potential developers and more out there who could run it.

Obviously right now none of these are on the table. But if we know that more and more data is coming, and we believe that there are positive values to individuals and society in being able to store and use it (not to mention research on it), can we not make it a priority?