Getting Patients To Engage With Their Healthcare Data Is Still A Challenge

I haven’t always been familiar with my healthcare records. In fact, until a few years ago, I couldn’t have told you anything about their contents, and in fact, didn’t give it a second thought.

More recently, though, I’ve developed an intense interest in my healthcare data, as I struggle to keep up with the handful of chronic conditions I manage. These days, I can cite you chapter and verse as to how my key health metrics are trending, whether the current trend represents a change and how it correlates with my day-to-day health status. I’ve actually become something of a health data nerd.

The truth, though, is that at least in the circles in which I travel, my interest in such things is still pretty unusual, even among those with chronic conditions. My sense is that for those who work outside of healthcare, aside from perhaps a small group of wearables power users, getting that granular wouldn’t be worth the effort. In fact, I believe that starting from the assumption that consumers generally want to see their records is a mistake. Worth noting is that all patients should have access to their health record (It’s their right and people like me will access it), but we also shouldn’t just assume that by making the record available a wave of patients will start accessing the record.

I can think of many reasons why most consumers don’t sift through their health data regularly, but from what I’ve seen the most common one is that people don’t want one more thing to worry about. (That’s certainly where my 70-something mom is coming from.) I also get the sense that many people think their doctors have everything in control and don’t need their help, or that they aren’t going to understand enough of what they see to make a difference.

This reluctance to get involved is particularly likely if a patient doesn’t feel that their doctor wants them to think for themselves and collaborate on their care. As someone who’s been treated as though my desire to track my numbers is icky and inappropriate, I feel their pain.

Unfortunately, when I talk with health professionals, many seem to think that patients are eager to engage with their healthcare information and use it to help themselves – and that all we have to do is make it simpler to get and they’ll jump all over it. But given these barriers, it seems to me that we’re further away from getting patients engaged with their care than you might think, and if we don’t acknowledge this our interoperability and data accessibility work will have far less impact than we’d like.

If our goal is to get patients engaged with their data (and care), we’re going to have to invest some time and effort in educating them on what to look for, when to ask questions and how to use health data to improve their lives.

One way to foster this level of confidence may be to use patient navigators. According to a recent survey by healthcare marketing and consulting firm Sage Growth Partners, patient navigation programs that use nonclinical navigators can do a great deal to improve patient engagement, with 91% of survey respondents reporting this effect.

It might also help if rather than waiting for patients to access their healthcare information, providers affirmatively encouraged them to review their records and share any questions or concerns that arise. Such encouragement would be fairly powerful if it comes from the mouth of a trusted doctor.

Still, it appears (at least to me) that what we ultimately need is to engender a larger cultural shift which engenders a greater sense of autonomy and agency in consumers. Without that, our efforts to make health data accessible to patients will be of little avail.

About the author

Anne Zieger

Anne Zieger

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.