Characterizing Patient Engagement in Research Funded by the Patient-Centered Outcomes Research Institute and Exploring the Moral Importance of Patient Engagement in Research

patient engagement;bioethics;qualitative research;Bioethics

Ellis, Lauren EDickersin, Kay ;

Johns Hopkins University

关键词: patient engagement;    bioethics;    qualitative research;    Bioethics;   

Others  :  https://jscholarship.library.jhu.edu/bitstream/handle/1774.2/60270/ELLIS-DISSERTATION-2015.pdf?sequence=1&isAllowed=y

瑞士|英语

来源: JOHNS HOPKINS DSpace Repository

【 摘 要 】

Patient engagement in research includes a range of activities in which researchers involve patients in ways other than as subjects of research.Research funders and researchers are increasingly recognizing patient engagement as a strategy that can lead to beneficial effects including the production of research that is more relevant to patients or of higher quality.The Patient-Centered Outcomes Research Institute (PCORI), a large research funding organization Congressionally authorized under the Patient Protection and Affordable Care Act, requires engagement of patients and other stakeholders in its funded comparative effectiveness research.Despite growing support for engagement, there is little empirical research and little conceptual scholarship examining patient engagement.This dissertation seeks to advance current understanding of patient engagement through three aims. Aim one seeks to characterize researchers’ experiences with patient engagement in research funded by PCORI, and aim two seeks to characterize patients’ experiences being engaged in PCORI-funded research. To address these empirical aims, interviews were conducted with both researchers and with the patients they were engaging in their PCORI-funded research. The results of these aims are reported in two papers. The first describes patient engagement in PCORI-funded projects including how, when, and why patients were engaged, and the extent to which patient input was reported to impact the relevance, feasibility, acceptability, and quality of the research.Findings suggest that the particular approach researchers use to engage patients may be less relevant to achieving desired outcomes than the manner in which engagement strategies are implemented. The second empirical paper focuses on challenges to and successful strategies for patient engagement as reported in interviews.This paper also provides suggested actions to address challenges and bolster infrastructure for engagement including modifications to institutional policies, development of programs and researcher networks, and provision of resources and training. Aim three explores the value of patient engagement from a normative perspective and ascertains the circumstances in which patient engagement is morally important. Drawing on interview findings, this conceptual paper analyzes the moral importance of the instrumental effects of engagement—namely, enhanced relevance, accountability, and respect—and whether engagement can be said to have intrinsic moral value.