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.