Making Health Data Patient-Friendly

Posted on May 6, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

Most of the efforts designed to make healthcare processes more transparent hope to make patients better shoppers. The assumption is that better-informed patients make better decisions, and that ultimately, if enough patients have the right data they’ll take steps which improve outcomes and lower the cost of care. And while the evidence for this assumption is sparse, the information may increase patient engagement in their care — and hopefully, their overall health.

That’s all well and good, but I believe too little attention has been paid to another dimension of transparency. To wit, I’d argue that it’s more than time to present patients with clinical data on a real- or near-real-time basis. Yes, shopping for the right doctor is good, but isn’t it even more important for patients to see what results he or she actually gets in their particular medical case?

Patients rarely get a well-developed look at their clinical data. Patient portals may offer access to test and imaging results from today through 10 years ago — my health system does — but offer no tools to put this data in context. If a patient wants to take a good look at their health history, and particularly, how test results correlate with their behavior, they’ll have to map the data out themselves. And that’s never going to work for your average patient.

Of course, there are obstacles to making this happen:

  • Physicians aren’t thrilled with the idea of giving patients broad healthcare data access. In fact, more than one doctor I’ve seen wouldn’t let me see test results until he or she had “approved” them.
  • Even if you set out to create some kind of clinical data dashboard, doing so isn’t trivial, at least if you want to see patients actually use it. Significant user testing would be a must to make this approach a success.
  • To my knowledge, no EMR vendor currently supports a patient dashboard or any other tools to help patients navigate their own data. So to create such an offering, providers would need to wait until their vendor produces such a tool or undertake a custom development project.

To some extent, the healthcare IT industry is already headed in this direction. For example, I’ve encountered mobile apps that attempt to provide some context for the data which they collect. But virtually all healthcare apps focus on just a few key indicators, such as, say calorie intake, exercise or medication compliance. For a patient to get a broad look at their health via app, they would have to bring together several sets of data, which simply isn’t practical.

Instead, why not give patients a broad look at their health status as seen through the rich data contained in an EMR? The final result could include not only data points, but also annotations from doctors as to the significance of trends and access to educational materials in context. That way, the patient could observe, say, the link between blood pressure levels, exercise, weight and med compliance, read comments from both their cardiologist and PCP on what has been working, and jump to research and education on cardiovascular health.

Ultimately, I’d argue, the chief obstacle to creating such an offering isn’t technical. Rather, it’s a cultural issue. Understandably, clinicians are concerned about the disruption such approaches might pose to their routine, as well as their ability to manage cases.

But if we are to make patients healthier, putting the right tools in their hands is absolutely necessary. And hey, after paying so much for EMRs, why not get more value for your money?

P.S. After writing this I discovered a description of a “digital health advisor” which parallels much of what I’m proposing. It’s worth a read!