Personal Health Data

Patient-Generated Health Data: Taking the Lottery Out of Love

The dating site wants to help singles “find the kind of relationship they’re looking for” by providing “the tools they need to help take the lottery out of love.”

The Centers for Medicare & Medicaid Services (CMS) would like to do the same for the relationship between patients and doctors through the “bi-directional availability of data,” as a notice in the Federal Register puts it.

Admit it: you didn’t know the feds were such fools for love.

Although the doctor-patient relationship has undergone a great deal of change, at its core it’s often remained as one-sided as traditional dating rituals where the balance of power is heavily weighted towards the man. In this case, it’s an information asymmetry favoring the doctor that has only gradually lessened after years of cultural and legal pressure.

Think of “bi-directional availability of data” as Betty Friedan in bureaucratese. In The Feminine Mystique, Friedan wrote of women finding fulfillment outside of their traditional roles. On p. 888 of the fetchingly titled, “Proposed Rule, CMS-1715-P” – I’ve greatly abbreviated the full title – CMS says this:

We believe the bi-directional availability of data, meaning that both patients and their health care providers have real-time access to the patient’s electronic health record (EHR), is critical. This includes patients being able to import their health data into their medical record and have it be available to health care providers.

Translation: Forget the traditional roles. Both clinicians and patients should have real-time access to the medical record, and both clinicians and patients should be able to contribute information that’s worth incorporating as part of the official medical record. “Engagement,” then, goes both ways.

It’s important to remember that what’s being described here is aspirational, not actual. CMS issued a Request for Information, not a draft regulation. In a comment period that closed Sept. 27, the agency specifically sought ideas on how to “encourage, enable and reward” providers for the capture, exchange and use of patient-generated health data (PGHD).

In comments to CMS, the Society for Participatory Medicine (SPM), on whose advocacy committee I serve, declared our belief that the importance of PGHD cannot be overestimated. We added:

This data represents the voice of the patient, and it should be embraced. It should be collected during and between clinical encounters, and it should be represented in clinical documentation. At a minimum, PGHD offers contextual information to better personalize care, while also providing information to help health professionals maintain or improve care quality….

Moreover, tracking health data provides patients with the capability to monitor and improve their health, understand their conditions, and productively function as full partners in their own care.

Note that phrase, “full partners in their own care.” That’s the kind of relationship many patients and progressive providers are seeking, and that’s the kind of relationship that PGHD has the potential to help enable.

However, as with Internet dating sites, the potency of online tools can be overrated. PGHD is complicated. It may come from digital monitoring devices, but not all devices necessarily produce data of identical validity; e.g., your three-year old Fitbit versus a heart monitor from your doctor’s office. Moreover, PGHD doesn’t have to be digital at all. It could simply be your response over time to a series of questions, such as the degree to which you were able to walk pain-free after a hip replacement.

Just as a romantic relationship can tank due to TMI (too much information), TMI can also torpedo a genuine doctor-patient partnership. Your doctor really doesn’t need to know what each of several thousand patients in their panel had to eat every day. It’s rarely individual data points, but trends, that hold the key. Avoiding TMI is why SPM believes that it’s still too early to mandate that PGHD be incorporated into EHRs. Instead, we said, CMS

should focus on identifying useful data, determining effective and convenient ways to capture, store it, and integrate it as appropriate with other relevant data and then display that information in a manner that conveys a useful, at-a-glance story to both patients and professionals.

Tell a story. Not Cinderella rescued by the prince, but a story of partnership and participatory medicine.


Michael L. Millenson, President, Health Quality Advisors LLC Michael L. Millenson, president of Health Quality Advisors LLC, Highland Park, IL, is a nationally recognized expert on quality of care improvement, patient-centered care and web-based health. He is the author of the critically acclaimed book, Demanding Medical Excellence: Doctors and Accountability in the Information Age, and he is adjunct associate professor of medicine in the Department of Medicine at Northwestern University's Feinberg School of Medicine. National Public Radio called him “in the vanguard of the movement” to measure and improve American medicine. Prior to starting his own firm, Millenson was a principal in the health-care practice of a major human resources consulting firm. Before that, he was a healthcare reporter for the Chicago Tribune, where he was nominated three times for a Pulitzer Prize. He serves on the boards of the American Journal of Medical Quality and Project Patient Care.

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