PatientsLikeMe gets $900K from RWJF to develop new measures for healthcare performance

PatientsLikeMe

PatientsLikeMe has scored a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance.

A portion of the funds will go towards a collaboration between PatientsLikeMe and the National Quality Forum (NQF) to develop, test and facilitate the broader use of patient-reported outcome measures (PROMs) to assess patient-reported health status. While PROMs have been used in clinical research, they are rarely used in routine clinical care to assess provider performance.

The Open Research Exchange platform will be used to ask patients to prioritize measures, and then PatientsLikeMe will develop and test them.“Measuring what is relevant, useful and actionable for patients has never been more important,” said PatientsLikeMe Co-founder and President Ben Heywood. “This initiative will help quantify the patient experience at the clinical level, so that real patient outcomes can start to prompt changes in behavior, help tailor care, and improve reimbursement. With it, we’ll start to move the whole system toward more patient-centered care.”

NQF is a not-for-profit, nonpartisan, multi-stakeholder, membership-based organization that works to help advance improvements in healthcare. It evaluates, endorses, and selects measures of quality, safety and cost for accountability. The collaboration with PatientsLikeMe is one of several that are part of NQF’s new Measure Incubator, an innovative effort that holds the potential to facilitate measure development and testing more efficiently through collaboration and partnership.

In 2013, RWJF gave PatientsLikeMe a grant to create the Open Research Exchange (ORE), an open-participation platform that allows researchers to connect with PatientsLikeMe’s 380,000 members to create, test and validate new measures. The collaboration with NQF will initially use the ORE platform to ask patients to prioritize measures, then PatientsLikeMe will develop and test them.

In recent months, PatientsLikeMe has been partnering with a number of organizations, including FDA, Partners HealthCare, AstraZeneca and the American College of Cardiology.