SMART challenge and P4: open source projects look toward the broader use of health records

by Andy Oram | @praxagora | +Andy Oram | Comment | 23 March 2011

In a country where doctors are still struggling to transfer basic patient information (such as continuity of care records) from one clinic to another, it may seem premature to think about seamless data exchange between a patient and multiple care organizations to support such things as real-time interventions in patient behavior and better clinical decision support. But this is precisely what medicine will need for the next breakthrough in making patients better and reducing costs. And many of the building blocks have recently fallen into place.

Two recent open source developments have noticed these opportunities and hope to create new ones from them. One is the SMART Apps for Health contest at Challenge.gov, based on the SMART Platform that is one of the darlings of Federal CTO Aneesh Chopra and other advocates for health care innovation. The other development is P4, the brainchild of a physician named Adrian Gropper who has recognized the importance of electronic records and made the leap into technology.

SMART challenge: Next steps for a quickly spreading open source API

I'm hoping the SMART Platform augurs the future of health IT: an open source project that proprietary vendors are rushing to adopt. The simple goal of SMART is to pull together health data from any appropriate source--labs, radiology, diagnoses, and even administrative information--and provide it in a common, well-documented, simple format so any programmer can write an app to process it. It's a sign of the mess electronic records have become over the years that this functionality hasn't emerged till now. And it's a sign of the tremendous strides health IT has made recently that SMART (and the building blocks on which it is based) has become so popular.

SMART has been released under the GPL, and is based on two other important open source projects: the INDIVO health record system and the I2B2 informatics system. Like INDIVO, the SMART project was largely developed by Children's Hospital Boston, and was presented at a meeting I attended today by Dr. Kenneth D. Mandl, a director of the Intelligent Health Laboratory at the hospital and at Harvard Medical School. SMART started out with the goal of providing a RESTful API into data. Not surprisingly, as Mandl reported, the team quickly found itself plunged into the task of developing standards for health-related data. Current standards either didn't apply to the data they were exposing or were inappropriate for the new uses to which they wanted to put it.

Health data is currently stored in a Babel of formats. Converting them all to a single pure information stream is hopeless; to make them available to research one must translate them on the fly to some universally recognized format. That's one of the goals of the report on health care released in December 2010 by the President's Council of Advisors on Science and Technology. SMART is developing software to do the translation and serve up data from whatever desired source in "containers." Applications can then query the containers through SMART's API to retrieve data and feed to research and clinical needs.

Justifying SMART, Mandl presented solid principles of modern data processing that will be familiar to regular Radar readers:

Data as a platform: Storage should be as flexible and free of bias as possible, so that innovators can easily write new applications that do surprising and wonderful things with it. This principle contrasts starkly with most current health records, which make the data conform to a single original purpose and make it hard to extract the data for any other use, much less keep it clean enough for unanticipated uses. (Talk to doctors about how little the diagnoses they enter for billing purposes have to do with the actual treatments patients need.)
An "Appstore for health": New applications should be welcome from any quarter. Mandl is hoping that apps will eventually cost just a few dollars, like a cell phone app. (Note to Apple: Mandl and the audience tended to use the terms "iPhone" and "Appstore" in a casual manner that slid from metaphors to generic terms for mobile devices and program repositories.) Mandl said that his teams' evaluation of apps would be on the loose side, more like Android than iPhone, but that the environment would not be a "Wild West." At each hospital or clinic, IT staff could set up their own repositories of approved apps, and add custom-built ones.
A "learning health system": Data should be the engine behind continuous improvement of our health care system. As Mandl said, "every patient should be an opportunity to learn."
Open source and open standards: As we've seen, standards are a prerequisite for data as a platform. Open source has done well for SMART and the platforms on which is based. But the current challenge, notably, allows proprietary as well as open source submissions. This agnosticism about licensing is a common factor across Challenge.gov. Apparently the sponsors believe they will encourage more and better submissions by allowing the developers to keep control over the resulting code. But at least most Challenge.gov rules require some kind of right to use the app the SMART challenge is totally silent on rights. The danger, of course, is the developers will get tired of maintaining an app or will add onerous features after it becomes popular.

An impressive list of electronic record vendors have promised support for SMART or integrated it into products in some way: Cerner, Siemens, Google, Microsoft, General Electric, and more. SMART seems to be on its way to a clean sweep of the electronic health care record industry. And one of its projects is aimed at the next frontier: integrating devices such as blood glucose readers into the system.

P4: Bringing patients into the health record and their own treatment

SMART is a widely championed collaboration among stellar institutions; P4 is the modest suggestion of a single doctor. But I'm including P4 in this blog because I think it's incredibly elegant. As you delve into it, the concept evolves from seeming quite clever to completely natural.

The project aims to create a lightweight communication system based on standards and open source software. Any device or application that the patient runs to record such things as blood pressure or mood could be hooked into the system. Furthermore, the patient would be able to share data with multiple care providers in a fine-grained way--just the cholesterol and blood pressure readings, for example, or just vaccination information. (This was another goal of the PCAST report mentioned in the previous section.)

Communicating medical records is such a central plank of health care reform that a division of Health and Human Services called the Office of the National Coordinator created two major open source projects with the help of electronic health record vendors: CONNECT and Direct. The latter is more lightweight, recently having released libraries that support the secure exchange of data over email.

Vendors will jump in now and produce systems they can sell to doctors for the exchange of continuity of care records. But Gropper wants the patients to have the same capabilities. To do that, he is linking up Direct with another open source project developed by the Markle Foundation for the Veterans Administration and Department of Defense: Blue Button.

Blue Button is a patient portal with a particularly simple interface. Log in to your account, press the button, and get a flat file in an easy-to-read format. Linked Data proponents grumble that the format is not structured enough, but like HTML it is simple to use and can be extended in the future.

Blue Button is currently only a one-way system, however. A veteran can look at his health data but can't upload new information. Nor can multiple providers share the data. P4 will fix all that by using a Direct interface to create two-way channels. If you are recovering from a broken leg and want to upload your range-of-motion progress every day, you will be able to do this (given that a format for the data is designed and universally recognized) with your orthopedic surgeon, your physical therapist, and your primary care provider. P4 will permit fine-grained access, so you can send out only the data you think is relevant to each institution.

Gropper is aiming to put together a team of open source coders to present this project to a VA challenge. Details can be found on the P4 web page.

tags: Blue Button, Direct project, EHRs, electronic health records, free software, health care, health IT, I2B2, INDIVO, medical, open source, P4, PCAST, SMART Platform