Patient-Centered Measurement Pilot Projects

Patient-centered measurement involves partnering with patients in a meaningful way to decide what we measure, how we measure it, and how we report and use the results of measurement. AIR developed the Principles for Making Health Care Measurement Patient-Centered to offer a vision of measurement that is patient-driven, holistic, transparent, comprehensible and timely, and co-created with patients.

With support from the Robert Wood Johnson Foundation, AIR launched small-scale pilots to demonstrate how to implement the principles in real-world settings. In January 2018, AIR issued a call for pilot project proposals and ultimately funded four pilots selected through a competitive review process. AIR convened a learning community among these pilots throughout their 18-month projects and gathered lessons learned and promising practices for patient-centered measurement. AIR is sharing these lessons learned with key stakeholders, including measure developers, patient and community advocates, and funders. To ensure a focus on patient-centeredness, AIR and each of the funded pilot projects partnered with patients and caregivers throughout this work.

Pilot Projects

Development of a Goal-Directed Care Planning Process and Evaluation Measure for Individuals Receiving Hemodialysis

This project team of researchers and patients developed a goal-directed care planning process to better align dialysis care and patient-identified goals and priorities. This patient-driven process includes routine symptom assessment and a companion measure reflecting how the dialysis care a patient receives fits with the patient’s goals.

Project Co-leads: Jennifer Flythe and Derek Forfang, University of North Carolina at Chapel Hill

Redefining Functional Status: Patient-Led Cancer Outcome Measurement

This project team of cancer survivors and advocates developed a set of measure concepts to assess individuals’ functional status following cancer diagnosis. This measure set includes patient-reported outcomes and accompanying process measures for routine assessment of functional status, during and after treatment, and timely actions in response to assessments.

Project Co-leads: Kristen McNiff and Shelley Fuld-Nasso, National Coalition for Cancer Survivorship

“No One Listens to Me”: Understanding Recovery When Patients Cannot Speak for Themselves

This project team of researchers, clinicians, and family caregivers advanced knowledge of what constitutes meaningful recovery in unconscious adults who have experienced a traumatic brain injury. The team developed a relationship-centered strategy for creating meaningful evaluations of neurobehavioral change during rehabilitation. The team’s goal was to understand what types of neurobehavioral change are interpreted as small, medium or large by family caregivers. Better understanding of how family caregivers evaluate change in their loved ones promotes transparent decision-making by facilitating conversations between clinicians and caregivers on behalf of vulnerable patients who cannot advocate for themselves.

Project Co-Leads: Trudy Mallinson, George Washington University, and Christina Papadimitriou, Oakland University

Improving Patient Experience of Respect and Autonomy During Maternity Care

This project team of researchers, clinicians, patients, and community partners implemented two measures of access to person-centered and respectful maternity care in three maternity 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, Oregon State University, and Saraswathi Vedam, University of British Columbia