Providers base their care decisions on a wide variety of patient information, such as patient and family history, vital signs, reports of symptoms or response to treatment.  This information traditionally is created in a visit to a provider or laboratory, but there are increasing examples of information being created by the individual or caregiver outside the clinical setting and reported to the provider.  This information is known as patient-generated health-information (PGHI) or patient-generated health data (PGHD). 

PGHD has been described as health-related data created, recorded, gathered or inferred by or from patients, family personal caregivers or designees to help address a health concern.  This data could be an observation, a test result, a device finding, a confirmation or a change/correction/addition of data in the patient’s existing health record.

While PGHD is not new, there are no widely accepted practices or policies to define its best use, much less to support its growth as a valued health care tool.  Beginning in 2012, ONC initiated a series of policy activities to advance knowledge of the field and promote implementation.   As 2013 draws to a close, we are pleased to report that a lot of progress has made.  A report from a Technical Expert Panel, convened at our request by our cooperative agreement partner the National eHealth Collaborative, captures the breadth of issues and opportunities for wider use of patient-generated information.  Their work contributed to positive discussions by the HIT Policy Committee and HIT Standards Committee in their respective December meetings about including a PGHD objective in Meaningful Use Stage 3, which is still under development.

A new Issue Brief, Patient-Generated Health Data and Health IT [PDF – 307 kb], describes all the work to date and a range of opportunities and next steps.   We look forward to building on all the input to help shape policy and standards work in 2014 and beyond.

With all good wishes for happy holidays and a healthy New Year!