1. Eliciting stakeholder preferences for patient-centered research
- Author
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Mostofsky,Elizabeth, Dunn,Jillian A, Hernández-DÃaz,Sonia, Johansson,Anna C, Mittleman,Murray A, Mostofsky,Elizabeth, Dunn,Jillian A, Hernández-DÃaz,Sonia, Johansson,Anna C, and Mittleman,Murray A
- Abstract
Elizabeth Mostofsky,1–3 Jillian A Dunn,3 Sonia Hernández-Díaz,3 Anna C Johansson,2,4 Murray A Mittleman1–4 1Cardiovascular Epidemiology Research Unit, Beth Israel Deaconess Medical Center, Boston, MA, USA; 2Department of Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA; 3Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA, USA; 4Department of Medicine, Harvard Medical School, Boston, MA, USA 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
- Published
- 2019