Making Health Data Patient-Friendly

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!

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.

2 Comments

  • Question to Anne Zieger: who cares more for medical record – the doctor or patient. What % sick patient want to see their medical data?
    Our health care system is sickness driven, giving data to patients serve nothing.

  • As long-time advocates of helping clients to build and put in place ‘best practice” protocols across a range of industry areas including healthcare, we found it is fairly easy in healthcare to build a knowledgebase of best practices that healthcare professionals can access via “service menus”.

    In the early days, the practices were specific to diagnosed diseases which made it important to get the diagnosis right. Over time, we build diagnostic algorithms that posted candidate diseases, allowing a healthcare professional to select a diagnosis, carry out a differential diagnosis and refine their diagnosis.

    Given that phraseology in the templates is entirely medical, Tx plans evolved from these data banks were and continue to be of little use to patients.

    Efforts to give patients selective access to this information via Patient Portals have largely failed – the result of patient lookups is more questions, requiring more answers, with no end to this.

    A well-known IT tactic called “data enrichment” solves the problem.

    With minor effort, posted material at any clinical form can automatically trigger lookup of context-situation appropriate “patient-friendly” phraseology and cause this to be included in patient EHRs. Filtering of the data avoids encumbering patient records for clinical use.

    All that remains is to grant access to the enriched data from Patient Portals and you have patient friendly data.

    Patient friendly data at Patient Portals does not eliminate requests for more information but it does allow a patient to better prepare for a call-in to healthcare professionals.

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