Building patient participation in quality of care through the healthcare stories project: A demonstration program in New York State HIV clinics

There is growing recognition that patients should play a central role in defining, assessing, and improving the quality of healthcare, thereby enhancing patient experiences. Healthcare organizations struggle to meet these goals, which require becoming more patient-centered and patient-involved. The Healthcare Stories Project (HCSP), a demonstration program of the NYS Department of Health AIDS Institute, aimed to address this. HCSP comprises three, stepwise activities to: 1) Capture how patients define and experience ‘quality of care’ in the clinic; 2) Engage patients and providers as equal partners in understanding and improving the quality of care; and through partnerships, 3) Support the building of a coproduced healthcare system. After reviewing HCSP and its rollout in New York HIV outpatient settings, we describe a qualitative process evaluation, consisting of interviews at two time points with implementing organizations (N=12, 11). Each activity offered an opportunity to share ideas and experiences of quality of care, generating concrete improvement project ideas. Activities strengthened patient involvement by engaging consumer advisory boards, and staff not traditionally involved in quality. While designed to be implemented with HIV patients, organizations implemented Activity Two and Three with broader populations. Organizations had the hardest time implementing Activity Three that focused on the coproduction concept, but they none the less applied and strengthened coproduced healthcare during Activities One and Two. Overall, HCSP is a promising model to advance patient-centered and patient-partnered quality of care, better understanding patient experiences and acting with patients to develop practical improvements and a more coproduced healthcare system.