More visible at Health Privacy Summit than Health Datapalooza.
On the first morning of the biggest conference on data in health care–the Health Datapalooza in Washington, DC–newspapers reported a bill allowing the Department of Veterans Affairs to outsource more of its care, sending veterans to private health care providers to relieve its burdensome shortage of doctors.
There has been extensive talk about the scandals at the VA and remedies for them, including the political and financial ramifications of partial privatization. Republicans have suggested it for some time, but for the solution to be picked up by socialist Independent Senator Bernie Sanders clinches the matter. What no one has pointed out yet, however–and what makes this development relevant to the Datapalooza–is that such a reform will make the free flow of patient information between providers more crucial than ever.
Bio-IT World shows what is possible and what is being accomplished
If your data consists of one million samples, but only 100 have the characteristics you’re looking for, and if each of the million samples contains 250,000 attributes, each of which is built of thousands of basic elements, you have a big data problem. This is kind of challenge faced by the 2,700 Bio-IT World attendees, who discover genetic interactions and create drugs for the rest of us.
Often they are looking for rare (orphan) diseases, or for cohorts who share a rare combination of genetic factors that require a unique treatment. The data sets get huge, particularly when the researchers start studying proteomics (the proteins active in the patients’ bodies).
So last week I took the subway downtown and crossed the two wind- and rain-whipped bridges that the city of Boston built to connect to the World Trade Center. I mingled for a day with attendees and exhibitors to find what data-related challenges they’re facing and what the latest solutions are. Here are some of the major themes I turned up.
New report covers areas of innovation and their difficulties
O’Reilly recently released a report I wrote called The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care. Along with our book Hacking Healthcare, I hope this report helps programmers who are curious about Health IT see what they need to learn and what they in turn can contribute to the field.
Computers in health are a potentially lucrative domain, to be sure, given a health care system through which $2.8 trillion, or $8.915 per person, passes through each year in the US alone. Interest by venture capitalists ebbs and flows, but the impetus to creative technological hacking is strong, as shown by the large number of challenges run by governments, pharmaceutical companies, insurers, and others.
Some things you should consider doing include:
- Join open source projects
- Numerous projects to collect and process health data are being conducted as free software; find one that raises your heartbeat and contribute. For instance, the most respected health care system in the country, VistA from the Department of Veterans Affairs, has new leadership in OSEHRA, which is trying to create a community of vendors and volunteers. You don’t need to understand the oddities of the MUMPS language on which VistA is based to contribute, although I believe some knowledge of the underlying database would be useful. But there are plenty of other projects too, such as the OpenMRS electronic record system and the projects that cooperate under the aegis of Open Health Tools.
New report ties together devices, data, records, and aspects of care.
Reformers in health care claim gigantic disruption on the horizon: devices that track our movements, new treatments through massive data crunching, fluid electronic records that reflect the patient’s status wherever she goes, and even the end of the doctor’s role. But predictions in the area of health IT are singularly detached from the realities of the technical environment that are supposed to make them happen.
To help technologists, clinicians, and the rest of us judge the state of health IT, I’ve released a report titled “The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care.” It offers an overview of each area of innovation to see what’s really happening and what we need to make it progress further and faster.
O'Reilly report covers major trends and tries to connect the neurons
If visualization is key to comprehending data, the field of health IT calls for better visualization. I am not talking here of pretty charts and animations. I am talking, rather, of a holistic, unified understanding of the bustle taking place in different corners of health: the collection and analysis of genetic data, the design of slim medical devices that replace refrigerator-sized pieces of equipment, the data crunching at hospitals delving into demographic data to identify at-risk patients.
There is no dearth of health reformers offering their visions for patient engagement, information exchange, better public health, and disruptive change to health industries. But they often accept too freely the promise of technology, without grasping how difficult the technical implementations of their reforms would be. Furthermore, no document I have found pulls together the various trends in technology and explores their interrelationships.
I have tried to fill this gap with a recently released report: The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care. This posting describes some of the issues it covers.
The 30,000-foot view and the nitty gritty details of working with electronic health data
Ever wonder what the heck “meaningful use” really means? By now, you’ve probably heard it come up in discussions of healthcare data. You might even know that it specifically pertains to electronic health records (EHRs). But what is it really about, and why should you care?
If you’ve ever had to carry a large folder of paper between specialists, or fill out the same medical history form in different offices over and over—with whatever details you happen to remember off the top of your head that day—then you already have some idea of why EHRs are a desirable thing. The idea is that EHRs will lead to better care—and better research data—through more complete and accurate record-keeping, and will eventually become part of health information exchanges (HIEs) with features like trend analysis and push-notifications. However, the mere installation of EHR software isn’t enough; we need not just cursory use but meaningful use of EHRs, and we need to ensure that the software being used meets certain standards of efficiency and security.
What is needed for successful reform of the health care system?
Here’s what we all know: that a data-rich health care future is coming our way. And what it will look like, in large outlines. Health care reformers have learned that no single practice will improve the system. All of the following, which were discussed at O’Reilly’s recent Strata Rx conference, must fall in place.
A report from an Open Health Tools meeting
I had a chance to listen in a recent meeting of Open Health Tools, a trade association bringing together companies, academics, and standards bodies who create open source software tools for all stages of the health care field. Open Health Tools has been around since 2007 and is attracting some impressive new members. The achievements of this “ecosystem” (as they call it) may soon put to rest the dismissive attitude many people in health care have toward open source.
A Tough Location for a Procedure
Free and open source software has lots of barriers yet to overcome in health care, similar to but in a somewhat different configuration from the barriers in other fields where it has triumphed (government, finance, commerce). Liability is at the top of everyone’s mind in health care. They have to be assured that J. Random Hacker has not just checked in a poorly tested update to the program they’re installing on their ICU monitoring station. There are many responsible stewards of open source EHRs (several packagers of the VA’s VistA project, as just one example, have spoken at our Open Source Convention) but the buyers have to understand better what is entailed in vetting and maintaining open source software.
Health care providers, outside of research institutions with technically adventurous staff, also prefer turn-key solutions. These to some extent are deceiving, because every institution needs to customize the software heavily for its own needs, and many regret the proprietary solutions they’ve tied themselves to when they find out how hard (sometimes beyond anyone’s definition of feasibility) or costly the customizations are. They are still afraid of open source’s fluidity, however. Read more…
Challenge to Meaningful Use by House leaders highlights difficulty of asking incumbents to be innovators
Working too closely with an industry can undercut innovation
Four leading members of the House Ways and Means Committee tore away last Thursday at the polite, cautious, incremental approach that the Department of Health and Human Service has been taking toward key goals of HITECH act that was meant to drag health care into the 21st century.
Specifically, the House leaders signaled their disappointment at the Stage 2 Meaningful Use rules, promulgated last August by the Office of the National Coordinator and the Center for Medicare & Medicaid Services. The Congressmen isolate certain rules that appear to be less stringent than Stage 1, point out that the key goals of interoperability and data exchange are weak, and most notably ask for a total stop to payments made to health care providers under Meaningful Use.