With funding from the Robert Wood Johnson Foundation, AIR funded four small-scale pilot projects to implement the five principles for patient-centered measurement. These principles define the essential elements of patient-centered measurement as co-created; patient-driven; holistic; transparent; and comprehensible and timely. Measurement is patient-centered when patients’ experiences, needs, goals, and values—as expressed by patients themselves—inform decisions about what we measure, how we assess health outcomes, and how we evaluate health care performance.
On Tuesday, Feb. 4, AIR hosted an online panel discussion with the pilot teams. Each team focused on different care journeys which include: maternity care, cancer treatment, rehabilitation for people who experienced a traumatic brain injury and can no longer speak for themselves, and in-center dialysis. All teams included at least one patient or caregiver as team member and practiced authentic partnership.
Below you will find more details about each of the four pilot teams that participated in the panel discussion:
- 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.
Co-presenters: Jennifer Flythe, Derek Forfang
- Redefining Functional Status: Patient-Led Cancer Outcome Measurement
This project team of cancer survivors and advocates developed a set of measurement concepts to assesses individuals’ functional status following cancer diagnosis. This set of concepts 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.
Co-presenters: Rebecca Esparza, Shelley Fuld Nasso
- “No One Listens to Me”: Understanding Recovery When Patients Cannot Speak for Themselves
This project team of researchers and caregivers advanced knowledge of what constitutes meaningful recovery in unconscious adults who have experienced a traumatic brain injury. The team developed a patient- and caregiver-centered strategy for creating meaningful indicators of change during rehabilitation. The team designed indicators that promote transparent, shared decisionmaking by facilitating conversations between clinicians and caregivers on behalf of vulnerable patients who cannot advocate for themselves during recovery.
Co-presenters: Trisha Kot, Christina Papadimitriou
- 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.
Co-presenters: Melissa Cheyney, Hillary Washburn