Open Source in Good Health and Vice Versa

Last week I wrote about the UK government's “new” IT strategy, which is designed in part to avoid some of the costly mistakes of the past. And as far as the latter go, there aren't many bigger or costlier than the NHS National...

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Last week I wrote about the UK government's "new" IT strategy, which is designed in part to avoid some of the costly mistakes of the past. And as far as the latter go, there aren't many bigger or costlier than the NHS National Programme for Information Technology (NpfIT).

Now, some of us might say that one of the reasons this was such a disaster was that it did just about everything wrong: it was imposed unilaterally from the top, and built around huge slabs of proprietary code – but you'd expect me to say that. So here's someone else opining much the same, slightly more politely:

difficulties have been experienced in the United Kingdom delivering the NPfIT on time and within budget. Additionally, concern has been expressed that a lack of clinical engagement threatens the success of the project. While some progress has been made with networks, hardware, and software, many promised benefits such as single-point data entry ("With IT, information can be captured once and used many times" - Downing Street 2002 NHS IT Briefing) are still eagerly awaited by practicing UK clinicians.

This comes from a fascinating new paper "Open Source, Open Standards, and Health Care Information Systems", which deals with an area I've long thought is – or at least should be – a key one for free software: healthcare. Here's its basic thesis about healthcare information systems (HIS) and open source:

While it is too early to assess the results of the fiscal stimulus, concern has been expressed that the procurement process, standards, and certification will be biased in favor of software vendors who operate closed development models and sell their software with proprietary licenses. Furthermore, this may be to the detriment of rapid widespread adoption, and meaningful usage, of effective HIS.

We believe that open source software (OSS) licensed HIS provide a key opportunity for the promotion of effective systems by enhancing clinical engagement in software development, fostering innovation, improving system usability, and reducing costs, and should therefore be central to a rational HIS procurement strategy.

In fact, there is already an open source project in this area that is widely used. It's based on the amusingly-named VistA code, which is in the public domain:

The U.S. Department of Veterans Affairs (VA) has developed and continues to maintain a robust EHR known as VistA – the Veterans Health Information Systems and Technology Architecture. This system was designed and developed to support a high-quality medical care environment for the military veterans in the United States. The VistA system is in production today at hundreds of VA medical centers and outpatient clinics across the country.

From this has sprung a couple of open source projects licensed under the AGPL, OpenVista Server:

OpenVista Server is an Electronic Health Record (EHR) and Health Information System (HIS) derived from the VA Freedom of Information Act (FOIA) VistA server release and includes defect corrections and a selection of commercial enhancements equivalent to what has been released at Medsphere client sites.

and OpenVista CIS:

OpenVista Clinical Information System (CIS) is a cross platform frontend for OpenVista Server based on C# and Gtk# / GTK. CIS runs on the MS and Mono .NET frameworks. It is based on the design of the VA's Computerized Patient Record System (CPRS) and includes image viewing and other commercial enhancements.

These projects have been running for a while, so it's good to see some more recent entrants into the field of open source healthcare applications. For example, here is Aurion from the ambitious Alembic Foundation:

Alembic's first project, Aurion, is an Open Source software project that will promote health IT interoperability nationwide in accordance with nationally-recognized standards. The direct ancestor to the Aurion Project is the multi-award winning CONNECT program built by FHA under the leadership of the Alembic Foundation's CEO, David Riley, and its chief operating officer, Vanessa Manchester, who previously worked within the FHA program management office.

Riley and Manchester chose Aurion as the initial project of the Alembic Foundation because they believe the Foundation can provide an effective vehicle for the public and private sectors to work together to build upon CONNECT. Supporting this important work through a nonprofit organization expands the ability for organizations of all sizes to contribute to Aurion through development and resources. It also opens more opportunities for organizations to participate in setting the requirements for and influencing the direction of Aurion.

According to Brian Behlendorf, the chief technology officer for the World Economic Forum, "Creating a nonprofit foundation to continue the work started by the federal government is the right thing to do. It allows the project to grow and involve a far larger constituency in its development, with clearer rules of engagement for everyone. Our hope is that this unleashes greater degrees of collaboration and innovation."

Behlendorf, of course, is one of the original creators of Apache, and his presence on the Alembic Foundation board is an encouraging sign in terms of it actually doing something and making a difference.

It's interesting to note that Aurion is based on the existing CONNECT program, just as the OpenVista applications draw on VistA. A similar story lies behind the SMART Platform, which is

A platform with substitutable apps constructed around core services is a promising approach to driving down healthcare costs, supporting standards evolution, accommodating differences in care workflow, fostering competition in the market, and accelerating innovation.

As Andy Oram explains:

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.

Oram also points to yet another new open source project in the healthcare field, P4:

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.

Whereas VistA, Aurion and SMART are big projects, P4 is a fine example of one person – in this case, a doctor – just deciding to do something I think that's a particularly hopeful sign, because it means that some people, at least, are realising that open source really is open to all, and that if you have an idea about how to meet a need, a project can coalesce around that. Taken together with the other applications discussed above, it gives hope that open source might make a significant contribution to healthcare. Let's hope the UK government agrees....

Update: Looks like things are even better than I thought:

The Department of Veterans Affairs (VA) has announced plans to move its ground-breaking VistA (Veterans Integrated System Technology Architecture) electronic health record (EHR) system to an open source platform. VistA has been in use for over 30 years and it currently supports 153 major VA hospitals and over 800 community based outpatient clinics. It is considered the most extensively used electronic health record system in the Nation. VA's decision to move to an open source platform is a game-changing approach to modernizing government legacy systems. The VA decision is the result of an open and collaborative process in which ACT-IAC was actively involved.

...

The ACT-IAC report recommended that VA move to an open source, open standards model for the reengineering of the next generation of VistA. It was the sense of the industry that this approach would create an environment within which VA employees, large prime contractors, healthcare professionals, innovative small companies, healthcare software vendors, and entrepreneurs can all contribute to improving "the best care anywhere" being provided by VA today. The ACT-IAC report was significant for two reasons. First, it provided VA with a strategic pathway and actionable plan for modernizing VistA. Second, the industry recommendations to VA were unanimous. Although the working group represented a wide diversity of perspectives within the IT and healthcare communities, its members were able to reach agreement on a strategy that would serve the nation.

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