Steps In Integrating Patient-Generated Health Data

Posted on May 24, 2016 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.

As the number of connected health devices in use has expanded, healthcare leaders have grappled with how to best leverage the data they generate. However, aside from a few largely experimental attempts, few providers are making active use of such data.

Part of the reason is that the connected health market is still maturing. With health tracking wearables, remote monitoring set-ups, mobile apps and more joining the chorus, it might be too soon to try and normalize all this data, much less harvest it for clinical use. Also, few healthcare organizations seem to have a mature strategy in place for digital health.

But technical issues may be the least of our problems. It’s important to note that providers have serious concerns around patient-generated health data (PGHD), ranging from questions about its validity to fears that such data will overwhelm them.

However, it’s possible to calm these fears, argues Christina Caraballo, senior healthcare strategist at Get Real Health.  Here’s her list of the top five concerns she’s heard from providers, with responses that may help put providers at ease:

  • Fear they’ll miss something in the flood of data. Add disclaimers, consent forms, video clips or easy-to-digest graphics clarifying what consumers can and can’t expect, explicitly limiting provider liability.
  • Worries over data privacy and security: Give consumers back some of the risk, by emphasizing that no medium is perfectly secure, including paper health records, and that they must determine whether the benefits of using digital health devices outweigh the risks.
  • Questions about data integrity and standardization: Emphasize that while the industry has made great process and standardization, interoperability, authentication, data provenance, reliability, validity, clinical value and even workflow, the bottom line is that the data still comes from patients, who don’t always report everything regardless of how you collect the data.
  • Concerns about impact on workflow: Underscore that if the data is presented in the right framework, it will be digestible in much the same way as other electronic medical data.
  • Resistance to pressure from consumers: Don’t demand that providers leverage PGHD out of the gate; instead, move incrementally into the PGHD management by letting patients collect data electronically, and then incorporate data into clinical systems once all stakeholders are on board.

Now, I’m not totally uncritical of Ms. Caraballo’s article. In particular, I take issue with her assertion that providers who balk at using PGHD are “naysayers” who “simply don’t want to change.” While there are always a few folks fitting this description in any profession, the concerns she outlines aren’t trivial, and brushing them off with vague reassurances won’t work.

Truthfully, if I were a provider I doubt I would be comfortable relying on PGHD, especially biometric data. As Ingrid Oakley-Girvan of Medable notes, wearables giant Fitbit was hit with a lawsuit earlier this year alleging that its heart rate monitoring technology is inaccurate, and I wouldn’t be surprised other such suits arise. Digital health trackers and apps have transitioned from novelty to quasi-official medical device very quickly — some might say too quickly – and being cautious about their output just makes sense.

Nonetheless, PGHD will play a role in patient care and management at some point in the future, and it makes sense to keep providers in the loop as these technologies progress. But rushing them into using such data would not be wise. Let’s make sure such technologies are vetted before they assume a routine role in care.