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Connected Health Conference Tops Itself–But How Broad is Adoption? Part 2 of 3

Posted on November 6, 2015 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 (http://oreilly.com/) 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 previous section of this article introduced this year’s highly successful conference, along with some reports from its lead sponsor, Partners HealthCare in Massachusetts. This section looks at some controversies.

A shiny techno-optimist view was offered by two leaders of the computer industry. Venture capitalist Vinod Khosla, co-founder of Sun Microsystems, is famous for suggesting that 80% of what doctors now do could be replaced by technology. Joichi Ito, Directory of MIT’s Media Lab, reinforced this claim by pointing out how much productivity scientists gained by replacing manual number-crunching with digital calculators. “The less subjective decision-making we have,” Khosla said, “the better health care quality will be.”

With diagnosis and prescribing thus handed over to smart machines (some descendant of IBM’s Watson, in my imagination), doctors can focus on building relationships with patients. It’s easy to parody the role of empathy in health care, but realistically, empathy is the one thing that we’ve found to make a difference in chronic care. One hospital in New Orleans achieved a 45% reduction in readmissions through interventions that reduce social isolation and other barriers such as transportation problems.

Furthermore, technology will not act alone: it will allow the delivery of care to move down the cost stack from specialists to general practitioners and from doctors to nurse practitioners.

However, a couple decades of research stand between us and the empathic, tech-supported future. Khosla expects a 20-year evolution, starting with systems that just recommend questions to rule out rare conditions, and devices to monitor patients. More specific interventions will come with the growth of data. Another speaker pointed out that recommendation systems are currently good enough to recommend movies we might like, but not to recommend what medication we should take.

A lot of data crunching in the health care space goes to predictions that have dubious validity and may even be obnoxious, such as guessing what your health patterns will be on the basis of your credit rating or the kind of car you drive. Thomas Goetz, former editor of WIRED Magazine and now an investor in medical research, stressed the importance of treating patients as partners if we want them to participate in big data research efforts. The subjects of experiments will demand full transparency about what we’re looking for.

The obverse of the coin was persuasively delivered by Ezekiel Emanuel from the University of Pennsylvania, the self-declared token techno-skeptic at the conference. He laid out a few narrow areas where we can expect technology to improve outcomes (or at least reduce costs) over the forseeable future: medication adherence (although he also wise-cracked that most people would do better on half their current medications) and preventing a useless trip to the hospital during the final weeks of life. Everything else we try to do relies on a long chain of technological and workflow changes that will be hard to put into place.

But mainly conference speakers firmly believe that technology is already making a difference, and are building businesses around them. Technologist Rosalind Picard found a possible indicator of epilectic seizures that had been missed by clinical research. Muse makes a headband that trains you to relax by showing your brain waves. And the social aspect of health is being avidly addressed, whether through simple phone calls to isolated elderly people (The Silver Line in Britain) or helping people with mental health problems communicate online anonymously (Big White Wall).

The anonymous communities of Big White Wall, of course, update practices that go back to the earliest days when ordinary people got onto the Internet in the 1980s. And the practice seems to work: CEO Jen Hyatt says that 73% of members share an issue there for the first time in their lives, and 95% of members report feeling better.

The final section of this article will generalize what I discovered at the conference.

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 (http://oreilly.com/) 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.