PatientsLikeMe, a project jointly backed by the Robert Wood Johnson Foundation and National Quality Forum, examined some of the benefits of including patient-reported outcomes information in creating clinical quality measures. The patient’s voice is “often silent or barely audible within existing measures,” the group found.
“To achieve and sustain a high-performing healthcare system, measurement must catalyze progress towards care that is not only safe and effective, but also patient-centered,” according to the report. “Moreover, as pay-for-performance programs continue to gain ground in the public and private sectors, it has never been more important to develop measures that assess healthcare quality in a way that matters to patients.”
The report identifies four major benefits to including patient-reported data when developing quality measures:
- Improve the quality of data. Gathering more patient-reported data can also improve symptoms data and minimize recall bias.
- Get a full look at the patient experience. Collecting patient-reported data provides a more complete picture of their experiences and will offer a broad spectrum of data for providers.
- Flag patient concerns. Patient-reported data can offer a glimpse at their priorities to help sort out better indicators of quality.
- Establish symptom priorities. When providers are able to determine what patients want from a quality-of-life perspective, they can better prioritize what symptoms to assess when analyzing quality.
Gathering this data will require a new approach to patient engagement, too, according to the report.
One solution: online communities that provide a broader look at patient priorities and experiences. PatientsLIkeMe itself is a large online community that includes more than 500,000 patients as members, gathering 43 million data points.