Putting Patient-Centered Measurement Into Practice: A Qualitative Exploratory Study of Four Pilot Projects.

Abstract

The Principles for Making Health Care Measurement Patient-Centered advance a patient-centered approach to health care measurement by guiding measurement efforts to reflect patient experiences and needs. This study aimed to understand how 4 pilot projects applied the Patient-Centered Measurement (PCM) principles in real-world health care measurement efforts. Qualitative exploratory study. Data sources included: 1) transcriptions of quarterly learning community meetings, 2) transcriptions of monthly one-on-one meetings; and 3) each project's progress reports and final reflection report. Researchers used NVivo to analyze data sources. Pilot program with required virtual learning community. Four pilot projects, selected from a call for proposals. Each received approximately $200,000 in funding for 18 months and included a patient or caregiver partner. Not applicable. Not applicable. To put principles of co-creation and patient-driven measurement into practice, projects established engagement structures that facilitated equal partnership, compensated partners and addressed barriers to inclusion, prepared team members to work together, co-created project activities, and acted on input from their partners. Co-creation and the patient-driven principles resulted in measure concepts and specifications that were holistic and driven by patient and caregiver priorities; adaptations to existing survey questions (when implementing an existing measure); transparent communication with patients about how data would be used; and a planned approach to survey results that was tied to action. This exploratory study identified actions that measurement teams can take to advance the patient-centeredness of measurement. Putting these principles into practice was feasible within projects with short timelines and small budgets using varied team structures, measurement approaches, and across different stages of the measurement life cycle. No one way of structuring the teams stood out as better for applying the principles. Co-creation with patient and caregiver partners was most crucial.