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

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 resea...

Celý popis

Uloženo v:
Podrobná bibliografie
Vydáno v:Value in health Ročník 23; číslo 6; s. 677 - 688
Hlavní autoři: Harrington, Rachel L., Hanna, Maya L., Oehrlein, Elisabeth M., Camp, Rob, Wheeler, Russell, Cooblall, Clarissa, Tesoro, Theresa, Scott, Amie M., von Gizycki, Rainald, Nguyen, Francis, Hareendran, Asha, Patrick, Donald L., Perfetto, Eleanor M.
Médium: Journal Article
Jazyk:angličtina
Vydáno: Lawrenceville Elsevier Inc 01.06.2020
Elsevier Science Ltd
Témata:
Clinical outcomes
definition
Definitions
Health care
Health care delivery
Health economics
Health services
Internal Medicine
Literary criticism
Literature reviews
Meta-analysis
outcomes research
patient centered
patient centric
patient engagement
Patient participation
patient research
Patient safety
Patient-centered care
Patients
Systematic review
patient research
patient centric
definition
outcomes research
patient engagement
patient centered
health economics
ISSN:1098-3015, 1524-4733, 1524-4733
On-line přístup:Získat plný text
Tagy: Přidat tag
Žádné tagy, Buďte první, kdo vytvoří štítek k tomuto záznamu!
Popis
Shrnutí: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 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. 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.” •The topic of patient engagement has become increasingly recognized in recent years as an important contribution to improved outcomes in the health research continuum. Until this point, the approach taken to defining and assessing engagement has not been systematic, with considerable differences among the definitions that do exist. Even fewer of those attempts at a definition have incorporated patient input.•Through a robust systematic review and qualitative-analysis process, a definition of patient engagement in research was generated that incorporates the most vital elements derived from our analysis. The aim of the definition is to meet the needs of, and support implementation by, a multistakeholder audience.•This proposed definition can act as a core statement of principles around which research decision making can be aligned. This includes the importance of inclusion, respect, and equality in the interactions between patients and researchers. Results of this work provide a concept against which the implementation of patient engagement in research can be evaluated and a starting point for further guidelines on “best practices” for patient engagement in the research process.A companion article from the study team's patient researchers discussing their experience working on this project and the definition's implications for patients will be in the July/August 2020 issue of ISPOR Value and Outcomes Spotlight.
Bibliografie:ObjectType-Article-2
SourceType-Scholarly Journals-1
content type line 14
ObjectType-Feature-3
ObjectType-Evidence Based Healthcare-1
ObjectType-Article-1
ObjectType-Feature-2
content type line 23
ObjectType-Undefined-3
ISSN:1098-3015
1524-4733
1524-4733
DOI:10.1016/j.jval.2020.01.019