Dataset Information

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.

ABSTRACT:

Background

Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts.

Objective

The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. SEARCH STRATEGY, INCLUSION CRITERIA, DATA EXTRACTION AND SYNTHESIS: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data.

Main results

We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were "respect" (n = 25, 45%) and "equitable power between all team members" (n = 21, 38%). Creating "trust between patient stakeholders and researchers" was described in 17 (31%) articles. Twenty-seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders' time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement.

Discussion and conclusions

Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.

SUBMITTER: Harrison JD

PROVIDER: S-EPMC6543160 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Publications

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.

Harrison James D JD Auerbach Andrew D AD Anderson Wendy W Fagan Maureen M Carnie Martha M Hanson Catherine C Banta Jim J Symczak Gina G Robinson Edmondo E Schnipper Jeffrey J Wong Celene C Weiss Rachel R

Health expectations : an international journal of public participation in health care and health policy 20190213 3

<h4>Background</h4>Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts.<h4>Objective</h4>The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakehol ...[more]

PMID: 30761699

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Project description:BackgroundBecause no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users.MethodsIn practice, engagement faces numerous challenges and is often time-consuming, expensive and 'thorny' work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, "How could it be otherwise?" ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of 'keeping open' the possible considerations that might emerge and including reflexive use of qualitative analytic methods.ResultsThis paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to 'open up' engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: (1) engagement and knowledge exchange; (2) analysis of mindmap contributions; (3) development of a conceptual schema (i.e. a map of concepts and their relationship); and (4) feedback, refinement and development of recommendations.ConclusionECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it.

Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Project description:BackgroundThe inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process.MethodsTo evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC.ResultsInterviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement.ConclusionsFindings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

Project description:Translational approaches to science have the potential to produce research that better meets the needs of community stakeholders and advances scientific understanding. Researchers involved in translational research make committed efforts to increased engagement and communication with stakeholders throughout the research process, from planning through implementation and evaluation. Referred to as solutions-driven research within the U.S. Environmental Protection Agency (EPA) Office of Research Development, this approach is being piloted on Cape Cod (Barnstable County), Massachusetts. EPA researchers are working in close coordination with community partners on the Cape to better understand and address challenges with managing nonpoint source nitrogen. The pilot also aims to assess the usefulness of solutions-driven research approaches for application in future EPA research efforts. Using semi-structured interviews with researchers and other stakeholders, we examined researchers' and stakeholders' perspectives on the impacts of intentional and intensive stakeholder engagement on research efforts to improve coastal water quality. This study provides a reflexive assessment of the perceived benefits and drawbacks for researchers and other stakeholders when there is an institutional expectation of an increased focus on engagement. We found that engagement has been truly intertwined with research in the pilot, participants perceived an improvement in research usefulness through developing valuable collaborative relationships, and that these relationships required significant time commitments to maintain. We also identified a need for an efficient infrastructure for developing and distributing communication materials for continued engagement with diverse stakeholders throughout the research process. The paper provides transferable practices for researchers seeking to use a solutions-driven research approach based on lessons learned thus far in how to support researchers and research planning in simultaneously prioritizing effective engagement and sound collaborative environmental science research to address a localized environmental challenge. This is an innovative approach in that interviews occurred as the implementation phase of the project began, with the goal of implementing the lessons learned outlined here in the ongoing project.Supplementary informationThe online version contains supplementary material available at 10.1007/s42532-022-00119-5.

Dataset Information

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.

Background

Objective

Main results

Discussion and conclusions

Publications

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.

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