What Is Patient-Generated Health Data, Why Is It Important?

What Is PGHD?

Defined by the Office of the National Coordinator for Health IT, patient-generated health data is “health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern,” the agency says on its website.

PGHD can take virtually any form, ranging from sophisticated reads from a patient’s blood glucose monitor all the way down to a handwritten list of symptoms. The former is becoming more common than the latter, and with the rise in both patient- and provider-facing technology, it is also easier to use.

According to the Agency for Healthcare Research and Quality (AHRQ), PGHD can include, but is not limited to:

• Health history
• Treatment history
• Biometric data
• Symptoms
• Lifestyle choices

AHRQ emphasizes that PGHD is distinct from clinical data collected by a provider because it originates with the patient or a family caregiver. Additionally, patients and their caregivers are entirely in charge of deciding how, and how much, they will share with clinicians.

Why Is PGHD Important?

Healthcare professionals value PGHD largely because it provides insights into patient health and wellness outside the four walls of the clinic or hospital. For example, the read from the above-mentioned blood glucose monitor will tell a provider how well a patient with diabetes is managing her condition outside the context of a clinic encounter.

This accomplishes three things. First, it tells the provider more about chronic disease self-management in everyday life. Second, it holds the patient accountable for that self-management. And finally, it can notify a clinician when a patient’s disease state becomes out of control and can spur intervention.

PGHD use is still limited, but the data suggest that when patients collect and providers view PGHD it can have a good impact on patient health. In 2017, data presented at that year’s HIMSS conference showed that two-thirds of patients who had PGHD as part of their clinical encounter felt more engaged.

Other experts have said it allows them to identify social determinants of health a patient might be experiencing, helping them to tailor care management plans to be more realistic and attainable.

Barriers To PGHD Use

But as noted above, PGHD use has been somewhat limited. Evidence about how to use it and how well it works is largely scant, partially because providers haven’t collected and used PGHD as much.

That data from the 2017 HIMSS conference revealed not many patients offer up PGHD unsolicited, with many saying it places a big burden on patients who are already managing an illness. That may be due to more limited uptake of remote patient monitoring tools that by virtue produce PGHD. Although on the market for some time, RPM adoption had been slower due to costs for patients and more limited reimbursement for providers.

Meanwhile, about a third of survey respondents said it was too difficult to upload the PGHD they did have onto the patient portal.

Healthcare providers have previously echoed those sentiments, saying it was hard to integrate PGHD into the EHR and that PGHD could often lead to data overload.

Will Remote Patient Monitoring, APIs Unlock PGHD?

Health IT has made important advances in recent years that can help expand the use of PGHD. For one thing, remote patient monitoring has become increasingly accessible. The COVID-19 pandemic, in particular, emphasized the importance of RPM tools and accelerated new payment mechanisms.

Particularly, CMS has codified RPM reimbursement in the 2021 Physician Fee Schedule, making it more feasible for providers to include these tools in patient care management.

And to that end, application programming interfaces (APIs) are making it easier for the patient to contribute this information on their end. APIs will make it easier for patients to streamline PGHD from a nutrition app or remote monitoring tool into their patient portal. Systems like Apple Health Records or its Android sister, CommonHealth, streamline this process via the smartphone.

That could kickstart PGHD use on the provider side, as well. Healthcare professionals have already begun this practice during the pandemic, when patients were reticent to visit the physical clinic. Clinicians employed PGHD, both in its sophisticated tech-enabled form and in simpler media, to keep an eye on chronic care patients.

It remains to be seen whether these changes will spur a tidal wave of PGHD collection and use. But as these tools continue to advance, it is likely healthcare organizations will continue to value patient-generated health data. The health information unlocks an important view into patient disease management, helping providers to keep a tighter lid on clinical quality and outcomes.