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July 30 2011

Report from Open Source convention health track, 2011

Open source software in health care? It's limited to a few pockets of use--at least in the United States--but if you look at it a bit, you start to wonder why any health care institution uses any proprietary software at all.

What the evidence suggests

Take the conference session by University of Chicago researchers commissioned to produce a report for Congress on open source in health care. They found several open source packages that met the needs for electronic records at rural providers with few resources, such as safety-net providers.

They found that providers who adopted open source started to make the changes that the adoption of electronic health records (or any major new system) is supposed to do, but rarely does in proprietary health settings.

  • They offer the kinds of extra attention to patients that improve their health, such as asking them questions about long-term health issues.

  • They coordinate care better between departments.

  • They have improved their workflows, saving a lot of money

And incidentally, deployment of an open source EHR took an estimated 40% of the cost of deploying a proprietary one.

Not many clinics of the type examined--those in rural, low-income areas--have the time and money to install electronic records, and far fewer use open source ones. But the half-dozen examined by the Chicago team were clear success stories. They covered a variety of areas and populations, and three used WorldVistA while three used other EHRs.

Their recommendations are:

  • Greater coordination between open source EHR developers and communities, to explain what open source is and how they benefit providers.

  • Forming a Community of Practice on health centers using open source EHRs.

  • Greater involvement from the Federal Government, not to sponsor open source, but to make communities aware that it's an option.

Why do so few providers adopt open source EHRs? The team attributed the problem partly to prejudice against open source. But I picked up another, deeper concern from their talk. They said success in implementing open source EHRs depends on a "strong, visionary leadership team." As much as we admire health providers, teams like that are hard to form and consequently hard to find. But of course, any significant improvement in work processes would require such a team. What the study demonstrated is that it happens more in the environment of an open source product.

There are some caveats to keep in mind when considering these findings--some limitations to the study. First, the researchers had very little data about the costs of implementing proprietary health care systems, because the vendors won't allow customers to discuss it, and just two studies have been published. Second, the sample of open source projects was small, although the consistency of positive results was impressive. And the researchers started out sympathetic to open source. Despite the endorsement of open source represented by their findings, they recognized that it's harder to find open source and that all the beneficial customizations take time and money. During a Birds-of-a-Feather session later in the conference, many of us agreed that proprietary solutions are here for quite some time, and can benefit by incorporating open source components.

The study nevertheless remains important and deserves to be released to Congress and the public by the Department of Health and Human Services. There's no point to keeping it under wraps; the researchers are proceeding with phase 2 of the study with independent funding and are sure to release it.

So who uses open source?

It's nice to hear about open source projects (and we had presentations on several at last year's OSCon health care track) but the question on the ground is what it's like to actually put one in place. The implementation story we heard this year was from a team involving Roberts-Hoffman Software and Tolven.

Roberts-Hoffman is an OSCon success story. Last year they received a contract from a small health care provider to complete a huge EHR project in a crazily short amount of time, including such big-ticket requirements as meeting HIPAA requirements. Roberts-Hoffman knew little about open source, but surmised that the customization it permitted would let them achieve their goal. Roberts-Hoffman CEO Vickie Hoffman therefore attended OSCon 2010, where she met a number of participants in the health care track (including me) and settled on Tolven as their provider.

The customer put some bumps in the road to to the open source approach. For instance, they asked with some anxiety whether an open source product would expose their data. Hoffman had a little educating to do.

Another hurdle was finding a vendor to take medication orders. Luckily, Lexicomp was willing to work with a small provider and showed a desire to have an open source solution for providers. Roberts-Hoffman ended up developing a Tolven module using Lexicomp's API and contributing it back to Tolven. This proprietary/open source merger was generally quite successful, although it was extra work providing tests that someone could run without a Lexicomp license.

In addition to meeting what originally seemed an impossible schedule, Tolven allowed an unusual degree of customization through templating, and ensured the system would work with standard medical vocabularies.

Why can't you deliver my data?

After presentations on health information exchanges at OSCON, I started to ruminate about data delivery. My wife and I had some problems with appliances this past Spring and indulged in some purchases of common household items, a gas grill from one company and a washing machine from another. Each offered free delivery. So if low-margin department stores can deliver 100-pound appliances, why can't my doctor deliver my data to a specialist I'm referred to?

The CONNECT Gateway and Direct project hopefully solve that problem. CONNECT is the older solution, with Direct offering an easier-to-implement system that small health care providers will appreciate. Both have the goal of allowing health care providers to exchange patient data with each other, and with other necessary organizations such as public health agencies, in a secure manner.

David Riley, who directed the conversion of CONNECT to an open-source, community-driven project at the Office of the National Coordinator in the Department of Health and Human Services, kicked off OSCon's health care track by describing the latest developments. He had led off last year's health care track with a perspective on CONNECT delivered from his role in government, and he moved smoothly this time into covering the events of the past year as a private developer.

The open-source and community aspects certainly proved their value when a controversy and lawsuit over government contracts threatened to stop development on CONNECT. Although that's all been resolved now, Riley decided in the Spring to leave government and set up an independent non-profit foundation, Alembic, to guide CONNECT. The original developers moved over to Alembic, notably Brian Behlendorf, and a number of new companies and contributors came along. Most of the vendors who had started out on the ONC project stayed with the ONC, and were advised by Riley to do so until Alembic's course was firm.

Lots of foundations handle open source projects (Apache, etc.) but Riley and Behlendorf decided none of them were proper for a government-centric health care project. CONNECT demanded a unique blend of sensitivity to the health care field and experience dealing with government agencies, who have special contract rules and have trouble dealing with communities. For instance, government agencies are tasked by Congress with developing particular solutions in a particular time frame, and cannot cite as an excuse that some developer had to take time off to get a full-time job elsewhere.

Riley knows how to handle the myriad pressures of these projects, and has brought that expertise to Alembic. CONNECT software has been released and further developed under a BSD license as the Aurion project. Now that the ONC is back on track and is making changes of its own, the two projects are trying to heal the fork and are following each other's changes closely. Because Aurion has to handle sensitive personal data deftly, Riley hopes to generalize some of the software and create other projects for handling personal data.

Two Microsoft staff came to OSCon to describe Direct and the open-source .NET libraries implementing it. It turned out that many in the audience were uninformed about Direct (despite an intense outreach effort by the ONC) and showed a good deal of confusion about it. So speakers Vaibhav Bhandari and Ali Emami spent the whole time alloted (and more) explaining Direct, with time for just a couple slides pointing out what the .NET libraries can do.

Part of the problem is that security is broken down into several different functions in ONC's solution. Direct does not help you decide whether to trust the person you're sending data to (you need to establish a trust relationship through a third party that grants certificates) or find out where to send it (you need to know the correspondent's email address or another connection point). But two providers or other health care entities who make an agreement to share data can use Direct to do so over email or other upcoming interfaces.

There was a lot of cynicism among attendees and speakers about whether government efforts, even with excellent protocols and libraries, can get doctors to offer patients and other doctors the necessary access to data. I think the reason I can get a big-box store to deliver an appliance but I can't get my doctor to deliver data is that the big-box store is part of a market, and therefore wants to please the customer. Despite all our talk of free markets in this country, health care is not a market. Instead, it's a grossly subsidized system where no one has choice. And it's not just the patients who suffer. Control is removed from the providers and payers as well.

The problem will be solved when patients start acting like customers and making appropriate demands. If you could say, "I'm not filling out those patient history forms one more time--you just get the information where I'm going," it might have an effect. More practically speaking, let's provide simple tools that let patients store their history on USB keys or some similar medium, so we can walk into a doctor's office and say "Here, load this up and you'll have everything you need."

What about you, now?

Patient control goes beyond data. It's really core to solving our crisis in health care and costs. A lot of sessions at OSCon covered things patients could do to take control of their health and their data, but most of them were assigned to the citizen health track (I mentioned them at the end of my preview article a week ago) and I couldn't attend them because they were concurrent with the health care track.

Eri Gentry delivered an inspiring keynote about her work in the biology start-up BioCurious, Karen Sandler (who had spoken in last year's health care track scared us all with the importance of putting open source software in medical devices, and Fred Trotter gave a brief but riveting summary of the problems in health care. Fred also led a session on the Quantified Self, which was largely a discussion with the audience about ways we could encourage better behavior in ourselves and the public at large.

Guaranteed to cause meaningful change

I've already touched on the importance of changing how most health care institutions treat patients, and how open source can help. David Uhlman (who has written a book for O'Reilly with Fred Trotter) covered the complex topic of meaningful use, a phrase that appeared in the recovery act of 2009 and that drives just about all the change in current U.S. institutions. The term "meaningful use" implies that providers do more than install electronic systems; they use them in ways that benefit the patients, the institutions themselves, and the government agencies that depend on their data and treatments.

But Uhlman pointed out that doctors and health administrators--let alone the vendors of EHRs--focus on the incentive money and seem eager to do the minimum that gets them a payout. This is self-defeating, because as the government will raise the requirements for meaningful use over the years, and will overwhelm quick-and-dirty implementations that fail to solve real problems. Of course, the health providers keep pushing back the more stringent requirements to later years, but they'll have to face the music someday. Perhaps the delay will be good for everyone in the long run, because it will give open source products a chance to demonstrate their value and make inroads where they are desperately needed.

As a crude incentive to install electronic records, meaningful use has been a big success. Before the recover act was passed, 15%-20% of U.S. providers had EHRs. Now the figures is 60% or 70% percent, and by the end of 2012 it will probably be 90%. But it remains to be seen whether doctors use these systems to make better clinical decisions, follow up with patients so they comply with treatments, and eliminate waste.

Uhlman said that technology accounts for about 20% of the solution. The rest is workflow. For instance, every provider should talk to patients on every visit about central health concerns, such as hypertension and smoking. Research has suggested that this will add 30% more time per visit. If it reduces illness and hospital admissions, of course, we'll all end up paying less in taxes and insurance. His slogan: meaningful use is a payout for quality data.

It may be surprising--especially to an OSCon audience--that one of the biggest hurdles to achieving meaningful use is basic computer skills. We're talking here about typing information in correctly, knowing that you need to scroll down to look at all information on the screen, and such like. All the institutions Uhlman visits think they're in fine shape and everybody has the basic skills, but every examination he's done proves that 20%-30% of the staff are novices in computer use. And of course, facilities are loath to spend extra money to develop these skills.

Open source everywhere

Open source has image and marketing problems in the health care field, but solutions are emerging all over the place. Three open source systems right now are certified for meaningful use: ClearHealth (Uhlman's own product), CareVue from MedSphere, and WorldVistA. OpenEMR is likely to join them soon, having completed the testing phase. vxVistA is certified but may depend on some proprietary pieces (the status was unclear during the discussion).

Two other intriguing projects presented at OSCon this year were popHealth and Indivo X. I interviewed architects from Indivo X and popHealth before they came to speak at OSCon. I'll just say here that popHealth has two valuable functions. It helps providers improve quality by providing a simple web interface that makes it easy for them to view and compare their quality measures (for instance, whether they offered appropriate treatment for overweight patients). Additionally, popHealth saves a huge amount of tedious manual effort by letting them automatically generate reports about these measures for government agencies. Indivo fills the highly valued space of personal health records. It is highly modular, permitting new data sources and apps to be added; in fact, speaker Daniel Haas wants it to be an "app store" for medical applications. Both projects use modern languages, frameworks, and databases, facilitating adoption and use.

Other health care track sessions

An excellent and stimulating track was rounded out with several other talks.

Shahid Shah delivered a talk on connecting medical devices to electronic record systems. He adroitly showed how the data collected from these devices is the most timely and accurate data we can get (better than direct reports from patients or doctors, and faster than labs), but we currently let it slip away from us. He also went over standard pieces of the open source stacks that facilitate the connection of devices, talked a bit about regulations, and discussed the role of routine engineering practices such as risk assessments and simulations.

Continuing on the quality theme, David Richards mentioned some lessons he learned designing a ways clinical decision support system. It's a demanding discipline. Accuracy is critical, but results must be available quickly so the doctor can use them to make decisions during the patient visit. Furthermore, the suggestions returned must be clear and precise.

Charlie Quinn talked about the collection of genetic information to achieve earlier diagnoses of serious conditions. I could not attend his talk because I was needed at another last-minute meeting, but I sat down for a while with him later.

The motto at his Benaroya Research Institute is to have diagnosis be more science, less art. With three drops of blood, they can do a range of tests on patients suspected of having particular health conditions. Genomic information in the blood can tell a lot about health, because blood contains viruses and other genomic material besides the patient's own genes.

Tests can compare the patients to each other and to a healthy population, narrowing down comparisons by age, race, and other demographics. As an example, the institute took samples before a vaccine was administered, and then at several frequent intervals in the month afterward. They could tell when the vaccine had the most powerful effect on the body.

The open source connection here is the institute's desire to share data among multiple institutions so that more patients can be compared and more correlations can be made. Quinn said it's hard to get institutions to open up their data.

All in all, I was energized by the health care track this year, and really impressed with the knowledge and commitment of the people I met. Audience questions were well-informed and contributed a lot to the presentations. OSCon shows that open source health care, although it hasn't broken into the mainstream yet, already inspires a passionate and highly competent community.

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