In June 2018, the American Institutes for Research, with support from the Robert Wood Johnson Foundation (RWJF), funded four small-scale pilot projects that demonstrate ways to implement the five principles for patient-centered measurement in real-world settings.
- Development of a Goal-Directed Care Planning Process and Evaluation Measure for Individuals Receiving Hemodialysis.
To better align dialysis care and patient-identified life goals, this project team will develop a life goal-directed care planning process. This patient-driven process will include routine symptom assessment and a companion measure reflecting how the dialysis care a patient receives fits with the patient’s life goalse goals.
Project Co-leads: Jennifer Flythe, Derek Forfang
Organization: University of North Carolina at Chapel Hill
- Return to Functional Status: Patient-Led Cancer Outcome Measurement
This project team of cancer patient advocates, survivors and caregivers will develop a measure concept that assesses a cancer survivor’s return to functional status during and after cancer treatment. This outcome measure will get to the heart of what matters to cancer patients and survivors: regaining their pre-cancer quality of life.
Project Co-leads: Kristen McNiff, Shelley Fuld-Nasso
Organization: National Coalition for Cancer Survivorship
- “No One Listens to Me,” Understanding Recovery When Patients Cannot Speak for Themselves: A Sequential Exploratory Mixed Methods Study with Caregiver Spokespersons
This project team will advance knowledge of what constitutes meaningful recovery in unconscious adults and support implementation of patient-centered data reporting and measure use. The team will develop a patient-centered, mixed methods strategy for creating meaningful indicators of change. The team will design these indicators to promote transparent shared decision making, by facilitating conversations between clinicians and caregivers on behalf of vulnerable patients who cannot advocate for themselves during recovery.
Project Co-Leads: Trudy Mallinson, Christina Papadimitriou
Organization: George Washington University
- Improving Patient Experience of Respect and Autonomy During Maternity Care: A Pilot Study to Implement Patient-Designed Quality Measures
This project team of patients and community partners will implement two new patient-centered measures of access to person-centered and respectful maternity care: the Mothers Autonomy in Decision Making scale (MADM) and the Mothers on Respect index (MOR-i). The project team will implement MADM and MOR-i in five care settings to determine acceptability, feasibility, and best timing for patients to provide feedback to inform improvement of health services.
Project Co-leads: Melissa Cheyney, Saraswathi Vedam
Organization: Oregon State University
The pilots started June 2018 and will continue through November 2019. In funding these pilots, RWJF and AIR aim to encourage adoption of all five principles in health care measurement by facilitating patient partnership and catalyzing improvements to current measurement practices. The goals of this program are to identify promising practices across a range of implementation strategies and to build momentum for further innovation across a community of patient-centered measurement stakeholders. Ultimately, by centering measurement around patients’ expressed preferences, needs and values, these efforts aim to drive progress towards better health, better care, and lower cost.
In the coming months, AIR will these share promising practices through webinars and other events. For additional information about the program, see the materials below or contact PCMpilots@air.org.