Jonathan Bush Loves Health Data–But How Will We Get As Much As He Wants?

Posted on September 24, 2014 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site ( and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The fervent hope of health care reformers is that someday we will each know as much about our bodies–our vital signs, the health of our organs, the contents of our genomes-as corporations know about our marketing habits. One of the recent expressions of this dream comes in Jonathan Bush’s engaging and readable account of the healthcare system, Where Does It Hurt?.

Bush is a tireless advocate for bottom-up, disruptive forces in healthcare, somewhat in the same camp as Vinod Khosla (whose Health Datapalooza keynote I covered) and Clayton Christensen (who wrote the forward to Bush’s book). What Bush brings to the discussion is hands-on experience at confronting the healthcare behemoth in an explicitly disruptive way (which failed) as well as fitting into the system while providing a bit more light by building athenahealth (which succeeded).

Bush’s book tours the wreckage of the conventional health care system–the waste, errors, lack of communication, and neglect of chronic conditions that readers of this blog know about–as well as some of the promising companies or non-profits that offer a way forward. His own prescription for the health care system rests on two main themes: the removal of regulations that prevent the emergence of a true market, and the use of massive data collection (on physicians and patients alike) to drive a rational approach to health care.

Both government and insurers would have a much smaller role in Bush’s ideal health care system. He recognizes that catastrophic conditions should be covered for all members of society, and that the industry will need (as all industries do) a certain minimum of regulation. (Bush even admitted that he “whined” to the ONC about the refusal of a competitor to allow data exchange.) But he wants government and insurers to leave a wide open field for the wild, new ideas of clinicians, entrepreneurs, and software developers.

Besides good old-fashioned human ingenuity, the active ingredient in this mix is data–good data (not what we have now), and lots of it. Bush’s own first healthcare business failed, as he explains, through lack of data along with the inconsistency of insurance payments. A concern for data runs through this book, and motivates his own entrance into the electronic health records market.

What’s missing from the Where Does It Hurt?, I think, is the importance of getting things in the right order: we can’t have engaged patients making free choices until an enormous infrastructure of data falls into place. I have looked at the dependencies between different aspects of health IT in my report, The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care. Let’s look at some details.

Bush wants patients to have choice–but there’s already a lot of choice in where they get surgery or other procedures performed. As he points out, some of the recent regulations (such as accountable care organizations) and trends in consolidations go in the wrong direction, removing much of this choice. (I have also written recently about limited networks.) One of Bush’s interesting suggestions is that hospitals learn to specialize and pay to fly patients long distances for procedures, a massive extension of the “medical tourism” affluent people sometimes engage in.

But even if we have full choice, we won’t be able to decide where to go unless quality measures are rigorously collected, analyzed, and published. Funny thing–quality measures are some of the major requirements for Meaningful Use, and the very things that health IT people complain about. What I hear over and over is that the ONC should have focused laser-like on interoperability and forgone supposedly minor quests like collecting quality measurements.

Well, turns out we’ll need these quality measures if we want a free market in health care. Can the industry collect these measures without being strong-armed by government? I don’t see how.

If I want a space heater, I can look in the latest Consumer Reports and see two dozen options rated for room heating, spot heating, fire safety, and many other characteristics. But comparable statistics aren’t so easy to generate in health care. Seeing what a mess the industry has made of basic reporting and data sharing in the data that matters most–patient encounters–we can’t wait for providers to give us decent quality measures.

There’s a lot more data we need besides provider data. Bush goes into some detail about the Khosla-like vision of patients collecting and sharing huge amounts of information in the search for new cures. Sites such as PatientsLikeMe suggest a disruptive movement that bypasses the conventional health care system, but most people are not going to bother collecting the data until they can use it in clinical settings.

And here we have the typical vicious cycle of inertia in health care: patients don’t collect data because their doctors won’t use it, doctors say they can’t even accept the data because their EHRs don’t have a place for it, and EHR vendors don’t make a place for it because there’s no demand. Stage 3 of Meaningful Use tries to mandate the inclusion of patient data in records, but the tremendous backward tug of industry resistance saps hope from the implementation of this stage.

So I like Bush’s vision, but have to ask: how will we get there? athenahealth seems to be doing its part to help. New developments such as Apple’s HealthKit may help as well. Perhaps Where Does It Hurt? can help forward-thinking vendors, doctors, health information exchanges, entrepreneurs, and ordinary people pull together into a movement to make a functioning system out of the pieces lying around the landscape.