Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group.

Autor: Harrington RL; National Committee for Quality Assurance, Washington, DC, USA. Electronic address: harrington@ncqa.org., Hanna ML; Boehringer Ingelheim Pharmaceuticals Inc., Ridgefield, CT USA., Oehrlein EM; National Health Council, Washington, DC, USA., Camp R; Community Advisory Board Programme, EURORDIS, Barcelona, Spain., Wheeler R; Leber's Hereditary Optic Neuropathy, Merusac, France., Cooblall C; Scientific & Health Policy Initiatives, ISPOR, Lawrenceville, NJ, USA., Tesoro T; Scientific & Health Policy Initiatives, ISPOR, Lawrenceville, NJ, USA., Scott AM; Consulting, New York, NY, USA., von Gizycki R; PRO RETINA Deutschland e.V., Aachen, Germany., Nguyen F; Bayer Healthcare Pharmaceuticals, Jersey City, NJ, USA., Hareendran A; Evidera, London, England, UK., Patrick DL; University of Washington, Seattle, Washington, USA., Perfetto EM; National Health Council, Washington, DC, USA.
Jazyk: angličtina
Zdroj: Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research [Value Health] 2020 Jun; Vol. 23 (6), pp. 677-688. Date of Electronic Publication: 2020 May 23.
DOI: 10.1016/j.jval.2020.01.019
Abstrakt: Objectives: Lack of clarity on the definition of "patient engagement" has been highlighted as a barrier to fully implementing patient engagement in research. This study identified themes within existing definitions related to patient engagement and proposes a consensus definition of "patient engagement in research."
Methods: A systematic review was conducted to identify definitions of patient engagement and related terms in published literature (2006-2018). Definitions were extracted and qualitatively analyzed to identify themes and characteristics. A multistakeholder approach, including academia, industry, and patient representation, was taken at all stages. A proposed definition is offered based on a synthesis of the findings.
Results: Of 1821 abstracts identified and screened for eligibility, 317 were selected for full-text review. Of these, 169 articles met inclusion criteria, from which 244 distinct definitions were extracted for analysis. The most frequently defined terms were: "patient-centered" (30.5%), "patient engagement" (15.5%), and "patient participation" (13.4%). The majority of definitions were specific to the healthcare delivery setting (70.5%); 11.9% were specific to research. Among the definitions of "patient engagement," the most common themes were "active process," "patient involvement," and "patient as participant." In the research setting, the top themes were "patient as partner," "patient involvement," and "active process"; these did not appear in the top 3 themes of nonresearch definitions.
Conclusion: Distinct themes are associated with the term "patient engagement" and with engagement in the "research" setting. Based on an analysis of existing literature and review by patient, industry, and academic stakeholders, we propose a scalable consensus definition of "patient engagement in research."
(Copyright © 2020 ISPOR–The Professional Society for Health Economics and Outcomes Research. Published by Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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