Using feedback from online patient communities of thousands
of patients, researchers identified opportunities to improve tools used to
collect patient-reported
outcomes (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.
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. 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.
“We need to focus on the issues that are most important to
patients,” said Shantanu Agrawal, MD, MPhil, NQF’s president and CEO. “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.
“Patients are the ultimate stakeholders in their care and
their health, so it’s critical to know what they need and value most,” said Ben
Heywood, co-founder and president of PatientsLikeMe. “This work is the bridge
between our robust online patient communities and the National Quality Forum’s
long-respected work to identify the best measures of healthcare quality.”
NQF discussed its work with PatientsLikeMe on a recent webinar, which kicked off the Measure Incubator’s 2017-2018 Learning Collaborative Patient-Centered Measurement Webinar Series. The webinar series continues September 25 with a panel discussion about patient-centered care measurement featuring researchers from the American Institutes for Research and NQF’s president and CEO, Shantanu Agrawal, MD, MPhil. Register now!