A new report from the National Quality Forum (NQF) highlights the potential of online patient communities to serve as virtual “town squares” where measure developers and other stakeholders can access the patient experience not otherwise available.
Working with NQF, the online patient network and research platform PatientsLikeME analyzed data from its multiple sclerosis (51,000 members), chronic obstructive pulmonary disease (2,500 members), and rheumatoid arthritis (10,000 members) communities to better understand health-related quality of life and functional outcomes. Members of these communities also provided feedback on specific tools used to collect patient-reported outcomes (PRO) data. According to NQF, the guidance from patients indicated that tools available for clinicians to collect PROs do not use language that patients would use to describe common symptoms, presenting an opportunity for “real-world” improvement.
Researchers identified opportunities to improve tools used to collect PROs. This approach marks the first time that patients’ voices have been captured on such a large scale for the development and refinement of select measures, according to NQF.
“We need to focus on the issues that are most important to patients,” said Shantanu Agrawal, M.D., NQF’s president and CEO, in a prepared statement. “This approach, drawing on the experience of thousands of patients engaged through the PatientsLikeMe community, is a huge step forward to amplify the patient voice to improve healthcare quality.”
The Robert Wood Johnson Foundation funded PatientsLikeMe, in partnership with NQF, to evaluate using feedback from online patient communities to inform quality measures for improving care in critically important clinical areas. The work builds on NQF’s framework, outlined in a 2013 report to translate PROs—reports of the status of a patient’s condition that come directly from the patient, without interpretation of the responses by clinicians or anyone else—into PRO-based performance measures.
Three measure development projects in NQF’s “Measure Incubator” served as the research test bed for this effort. The Measure Incubator facilitates efficient measure development and testing in areas of healthcare for which quality measures are underdeveloped or nonexistent.
More than half of the NQF Measure Incubator’s current projects focus on PRO-based performance measures, which NQF stakeholders identified as high-priority because there are too few of these kinds of measures in use today.
