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

Abstract

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)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016)(2017)(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."

How to engage patient partners in health service research: a scoping review protocol

“…There are many discussions relevant to defining and understanding different concepts in this area, e.g. Harrington et al [20]. We will not go further into these discussions, but instead focus on the aim of our study, which is to examine how to engage patient partners most effectively in the research process.…”

Survival after acute episodes of immune-mediated thrombotic thrombocytopenic purpura (iTTP) – cognitive functioning and health-related quality of life impact: a descriptive cross-sectional survey of adults living with iTTP in the United Kingdom

“…The survey development included patient engagement exercises consistent with recommended good practice [17]. A four-step-process was followed: (1) desk-top review to identify concept elicitation studies investigating HRQoL and functioning in iTTP (January 2019; as expected, the initial search yielded limited findings, and the search was extended to all forms of TTP); (2) concept elicitation exercise with three adults with iTTP, recruited through the TTP Network; (3) concept mapping to select relevant PROMs and define bespoke questions; and (4) cognitive debriefing conducted with three UK adults living with iTTP to confirm understanding and relevance of questions.…”

Development of a Patient-Reported Outcome Measure for Non-Alcoholic Steatohepatitis (NASH-CHECK): Results of a Qualitative Study

“…The narratives from searches of social media reinforce the observation that living with NASH can have a profound impact on many aspects of patients’ lives, including their ability to conduct day-to-day activities, their personal and social relationships, and, ultimately, their HRQoL [ 40 , 41 ]. Clinical experts and patient representatives reviewed the findings from the searches of the literature and social media and confirmed that the findings largely matched their views of the patient experience.…”

“…Development of the NASH-CHECK aligned with regulatory expectations [ 22 – 24 ] and good research practices [ 40 ]. The FDA guidance makes a number of recommendations for PROs that are to be used for label claims.…”