I spent three days last week at the American Medical Informatics Association (AMIA) Spring Congress. I was there to present lessons learned from Michigan's $3.2M NIH Roadmap contract funded under the 2003 "Re-Engineering the Clinical Research Enterprise" Broad Agency Announcement (BAA) in the Clinical Research Informatics track, but I spent a few of the sessions in the Personal Health Records (PHR) track.
Unsurprisingly, there was a lot of buzz in the PHR track about Google Health, and to a lesser degree, Microsoft HealthVault. Google Health was more prominent for several reasons, not all of which are enduringly pertinent: its public debut happened more recently; Google does not suffer from the Borg-like "Evil Empire" image from which Microsoft suffers; and Dr. Roni Zeiger, MD, Google Health Product Manager, was an eloquent and well-received speaker at one of the sessions.
That was Thursday. My presentations were on Friday right after lunch, so I was a bit distracted that morning and missed a couple of breakout sessions. After my time in the limelight, I spent a very inspiring hour talking with Bob DiLaura of Cleveland Clinic, during which we speculated about the future of PHRs. One assertion with which I believe we both agree is that the entry of these two major players is going to revolutionize the healthcare records "marketplace".
I put "marketplace" in quotes because in the USA a market implies exchange of value that can be represented in monetary terms. HealthVault and Google Health are free, and as FasterCures CEO Greg Simon said in one of the keynotes, "Free is the new money". Google and Microsoft will aim for volume, and monetization will come later. It's not terribly difficult to imagine a variety of ways huge volumes of consumer health records could be monetized without violating patient privacy. But there are a lot of red herrings in these waters. Let's look through the glass window in the bottom of the boat here and see what these red herrings look like.
Red Herring #1: Monetization
Monetization is the first (and reddest) of the red herrings. We shouldn't give custody of copies of our medical records to Google, Microsoft, and other PHR providers because they will sell them for profit.
Let's assume the PHR providers understand from the outset that the data they sell cannot be personally identifiable. To do so would be illegal in many if not most jurisdictions, but it would also be killing the goose that lays the golden eggs.
Even if the data were aggregated and not identifiable, it seems somehow lurid for anyone to get rich off a repository of millions, or better yet tens or hundreds of millions, of personal health records.
So, who are the customers for such data? Insurers, for one. They want such data so they can study the prevalence of various disorders and the outcomes for differing treatment protocols. Do they want these data so they can better define pre-existing conditions they want to exclude? You bet your bippy that's one use for the data. But the problem there isn't the insurer for buying or the PHR provider for selling the data, it's the fragmented system that sets up such Prisoner's Dilemma problems in the first place.
Edward Abbey once wrote, when the protagonist of his novel was throwing beer cans out of his Cadillac convertible onto the Texas highway, that the real problem wasn't the beer can - it was the road. We have a similar situation here. We are a country where one out of six of us is uninsured, and our healthcare costs more than twice as much per capita as the next most expensive health care system in the OECD, and two and a half times the average in that cohort. Something is terribly wrong, and Google and Microsoft aren't the villains in that scenario.
In fact they could be seen as heroes, in a way, given that finding the most cost-effective treatment protocols increases the quality of care and our potential for treating a larger fraction of the population.
Pharmas will want the data for the same reason. The feasibility of truly large scale Phase 4 protocols depends on access to large quantities of data. At present there is no way to obtain such data on the scale that would be needed for optimal benefit. Pharmas will definitely be in the checkout line when the data goes on sale.
And finally, the public health agencies will be customers, for the same reasons. They can't afford to do epidemiological studies on the scale that such a rich lode of health information would provide. On the other hand we, the healthcare consuming public, can't afford for them not to do such studies.
Red Herring #2: Impracticality
It has been pointed out that getting the data into the PHR repositories is an unendurable burden, and for that reason it will never happen. This is a specious argument, because much of the data will be reflected automatically from healthcare system EHR repositories, as Cleveland Clinic is doing with Google Health. As for the paper charts, getting those data into the system will involve significantly more effort, to be sure.
I feel optimistic on that front as well. Google is hard at work here on the University of Michigan campus, as well as at Harvard and others, scanning our library systems' tens of millions of books and other documents into their system. The scanning process involves OCR for indexing purposes. This is being done for free - and free is, you will recall, the new money.
Trust me, someday soon practicality will not be the issue. Not with a lode of data this rich.
Red Herring #3: Quality of the data
Some of the data in a PHR will be patient-entered. Isn't such data suspect from a quality standpoint? Let's leave aside the issue of the comparative quality of the data in the hospital and clinic records; if you want to maintain that these data sources are pristine, the burden of proof is on you. But that aside, yes, the quality of some data points will be suspect. On the other hand, the sheer volume of data should be a huge stabilizing factor in terms of quality. When you have hundreds of millions of records, the overall accuracy should be very acceptable, especially for uses that were impossible before such data were to become available.
Red Herring #4: Ethics
I heard a representative of Kaiser Permanente say that there are ethical issues in making the patient's healthcare data available to them directly. Can we trust them with all that information about their own bodies? If a breach occurs downstream, aren't we indirectly responsible?
Suppose you give a patient a paper document containing news of her HIV-positive diagnosis, and she leaves that piece of paper on the table at the company cafeteria, where her supervisor finds it. Are you, the healthcare provider and diagnostician, responsible? I'm sure a tort litigator would try to say Yes, but I doubt if it will stick. The same logic will apply to PHRs. It may be a rocky legal road at first, as the tort lawyers test the waters, but that's not an ethical issue, it's a legal issue. The ethical issue, in my mind, is whether it is right to withhold such data from the patient, not whether it's right to provide it.
Parting thoughts: Disruptive innovation
This is a classic disruptive innovation, as Clayton Christensen described the phenomenon. Something that is now done well on a large, expensive scale will be done less expensively, with fewer features, targeted at a market thus far unable to afford the existing product or service. By expanding the market, a whole new field of innovation opens up, a field the high-end providers can't afford to enter, even if they see the need - they're too busy satisfying the needs of their existing high-end customers, who want to push the old products to new heights of functionality.
Ultimately the high end becomes a niche in a much larger market segment, a segment created by the disruptive innovation. That's what's happening here. Will Epic, GE, Siemens and the other EHR vendors go out of business? No, but neither are they likely to be the winners in this new game. In their business model, free is a loss leader, not a revenue generator. Of course they could change and adapt, but that outcome is a rarity in situations involving disruptive innovation.
The sharks - Google and Microsoft being the largest - are going to outswim the red herrings. It will take a while, but it has the feel of inevitability.