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

Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research
Rachel L HarringtonEleanor M Perfetto

Abstract

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." 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. 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 t...Continue Reading

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Citations

Sep 3, 2020·Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen·Frank Brunsmann
Apr 25, 2021·Annals of Epidemiology·Jennifer SalernoEdward S Peters
Apr 28, 2021·Research Involvement and Engagement·Sarah Cecilie TscherningLotte Ørneborg Rodkjær
Jul 20, 2021·EBioMedicine·Grace FoxManoj M Lalu
Dec 17, 2021·PharmacoEconomics·Talitha FeenstraSalah Ghabri

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