Eliciting stakeholder preferences for patient-centered research

BACKGROUND: Rather than identifying exposures and outcomes for research solely based on interests of medical professionals, there is a need for research that answers questions that are important to patients, so that they may make treatment decisions based on evidence that reflect their individual preferences. OBJECTIVE: To identify exposures and outcomes of interest that could be studied with electronic health record data from inpatient care. DESIGN, SETTING, PARTICIPANTS: Mixed-methods analysis of semi-structured interviews administered in 2017 to 76 patients and 26 physicians who receive or provide care at Beth Israel Deaconess Medical Center in Boston, MA. MEASUREMENTS: After conducting detailed semi-structured interviews about topics of interest that can be studied using electronic health records of inpatient care, we used an inductive approach to identify themes about the health care experience. RESULTS: Participants reported concerns about adverse effects of medication changes, drug interactions, and surgery and other invasive procedures. The outcomes of greatest concern to them were in-hospital deaths and hospital-acquired infections. Participants commented on the importance of clear communication and information transfers, the hospital environment, accurate skills and knowledge, and upholding patient dignity and respect. CONCLUSION: Engaging patients and physicians in the research development process provided insight to the exposures and outcomes they consider important. Our questions about exposures and outcomes of interest were restricted to topics that could be studied with electronic health record data from inpatient care, but using a similar approach to elicit feedback about the health care experience could be used to glean insight for other areas of future research.