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The Fight For Patient Health Data Access Is Just Beginning

Posted on July 11, 2017 I Written By

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

When some of us fight to give patients more access to their health records, we pitch everyone on the benefits it can offer — and act as though everyone feels the same way.  But as most of us know, in their heart of hearts, many healthcare industry groups aren’t exactly thrilled about sharing their clinical data.

I’ve seen this first hand, far too many times. As I noted in a previous column, some providers all but refuse to provide me with my health data, and others act like they’re doing me a big favor by deigning to share it. Yet others have put daunting processes in place for collecting your records or make you wait weeks or months for your data. Unfortunately, the truth, however inconvenient it may be, is that they have reasons to act this way.

Sure, in public, hospital execs argue for sharing data with both patients and other institutions. They all know that this can increase patient engagement and boost population health. But in private, they worry that sharing such data will encourage patients to go to other hospitals at will, and possibly arm their competitors in their battle for market share.

Medical groups have their own concerns. Physicians understand that putting data in patient’s hands can lead to better patient self-management, which can tangibly improve outcomes. That’s pretty important in an era when government and commercial payers are demanding measurably improved outcomes.

Still, though they might not admit it, doctors don’t want to deluge patients with a flood of data which could cause them to worry about inconsequential issues, or feel that data-equipped patients will challenge their judgment. And can we please admit that some simply don’t like ceding power over their domain?

Given all of this, I wasn’t surprised to read that several groups are working to improve patients’ access to their health data. Nor was it news to me that such groups are struggling (though it was interesting to hear what they’re doing to help).

MedCity News spoke to the cofounder of one such group, Share for Cures, which works to encourage patients to share their health data for medical research. The group also hopes to foster other forms of patient health data sharing.

Cofounder Jennifer King told MCN that patients face a technology barrier to accessing such records. For example, she notes, existing digital health tools may offer limited interoperability with other data sets, and patients may not be sure how to use portals. Her group is working to remove these obstacles, but “it’s still not easy,” King told a reporter.

Meanwhile, she notes, almost every hospital has implemented a customized medical record, which can often block data sharing even if the hospitals buy EMRs from the same vendor. Meanwhile, if patients have multiple doctors, at least a few will have EMRs that don’t play well with others, so sharing records between them may not be possible, King said.

To address such data sharing issues, King’s nonprofit has created a platform called SHARE, an acronym for System for Health and Research Data Exchange. SHARE lets users collect and aggregate health and wellness data from multiple sources, including physician EMRs, drug stores, mobile health apps and almost half the hospitals in the U.S.

Not only does SHARE make it easy for patients to access their own data, it’s also simple to share that data with medical research teams. This approach offers researchers an important set of benefits, notably the ability to be sure patients have consented to having their data used, King notes. “One of the ways around [HIPAA] is that patient are the true owners,” she said. “With direct patient authorization…it’s not a HIPAA issue because it’s not the doctor sharing it with someone else. It’s the patient sharing it.”

Unfortunately (and this is me talking again) the platform faces the same challenges as any other data sharing initiative.

In this case, the problem is that like other interoperability solutions, SHARE can only amass data that providers are actually able to share, and that leaves a lot of them out of the picture. In other words, it can’t do much to solve the underlying problem. Another major issue is that if patients are reluctant to use even something as simplified as a portal, they’re not to likely to use SHARE either.

I’m all in favor of pushing for greater patient data access, for personal as well as professional reasons. And I’m glad to hear that there are groups springing up to address the problem, which is obviously pretty substantial. I suspect, though, that this is just the beginning of the fight for patient data access.

Until someone comes up with a solution that makes it easy and comfortable for providers to share data, while diffusing their competitive concerns, it’s just going to be more of the same old, same old. I’m not going to hold my breath waiting for that to happen.

tranSMART and i2b2 Show that Open Source Software Can Fuel Precision Medicine

Posted on April 19, 2017 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 ( 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.

Medical reformers have said for years that the clinic and the research center have to start working closely together. The reformists’ ideal–rarely approached by any current institution–is for doctors to stream data about treatments and outcomes to the researchers, who in turn inject the insights that their analytics find back into the clinic to make a learning institution. But the clinicians and researchers have trouble getting on the same page culturally, and difficulties in data exchange exacerbate the problem.

On the data exchange front, software developers have long seen open source software as the solution. Proprietary companies are stingy in their willingness to connect. They parcel out gateways to other providers as expensive favors, and the formats often fail to mesh anyway (as we’ve always seen in electronic health records) because they are kept secret. In contrast, open source formats are out for everyone to peruse, and they tend to be simpler and more intuitive. As open source, the software can be enhanced by anyone with programming skill in order to work with other open source software.

Both of these principles are on display in the recent merger announced by two open source projects, the tranSMART Foundation and i2b2. As an organizational matter, this is perhaps a minor historical note–a long-awaited rectification of some organizational problems that have kept apart two groups of programmers who should always have been working together. But as a harbinger of progress in medicine, the announcement is very significant.

tranSMART logo

Here’s a bit about what these two projects do, to catch up readers who haven’t been following their achievements.

  • i2b2 allows doctors to transform clinical data into a common format suitable for research. The project started in 2004 in response to an NIH Roadmap initiative. It was the brainchild of medical researchers trying to overcome the frustrating barriers to extracting and sharing patient data from EHRs. The nugget from which i2b2 came was a project of the major Boston hospital consortium, Partners Healthcare. As described in another article, the project was housed at the Harvard Medical School and mostly funded by NIH.

  • The “trans” in tranSMART stands for translational research, the scientific effort that turns chemistry and biology into useful cures. It was a visionary impulse among several pharma companies that led them to create the tranSMART Foundation in 2013 from a Johnson & Johnson project, as I have documented elsewhere, and then to keep it open source and turn it into a model of successful collaboration. Their software helps researchers represent clinical and research data in ways that facilitate analytics and visualizations. In an inspired moment, the founders of the tranSMART project chose the i2b2 data format as the basis for their project. So the tranSMART and i2b2 foundations have always worked on joint projects and coordinated their progress, working also with the SMART open source API.

Why, then, have tranSMART and i2b2 remained separate organizations for the past three or four years? I talked recently with Keith Elliston, CEO of the tranSMART, who pointed to cultural differences as the factor that kept them apart. A physician culture drove i2b2, whereas a pharma and biochemistry research culture drove tranSMART. In addition, as development shops, they evolved in very different ways from the start.

tranSMART, as I said, adopted a robust open source strategy early on. They recognized the importance of developing a community, and the whole point of developing a foundation–just like other stalwarts of the free software community, such as the Apache Foundation, OpenStack Foundation, and Linux Foundation–was to provide a nurturing but neutral watering hole from which many different companies and contributors could draw what they need. Now the tranSMART code base benefits from 125 different individual contributors.

In contrast, i2b2 started and remained a small, closely-knit team. Although the software was under an open source license, the project operated in a more conservative model, although accepting external contributions.

Elliston says the two projects have been talking for the last two and a half years about improving integration and more recently merging, and that each has learned the best of what the other has to offer in order to meet in the middle. tranSMART is adopting some of i2b2’s planning, while i2b2 is learning how to organize a community around its work.

Together they believe their projects can improve more quickly. Ultimately, they’ll contribute to the movement to target cures to patients, proceeding now under the name Precision Medicine. Fund-raising and partnerships will be easier.

I have written repeatedly about these organizations to show the power that free and open source software brings to medicine. Their timely merger shows that open source overcomes cultural and institutional barriers. What it did for these two organizations it can do for the fractured landscape of hospitals, clinics, long-term care facilities, behavioral health centers, and other medical institutions struggling to work together. My hope is that the new foundation’s model for collaboration, as well as the results of its research, can slay the growing monster of health care costs and make us all healthier.