Patient and public engagement in research and health system decision making: A systematic review of evaluation tools
Antoine Boivin,Audrey L’Espérance,François-Pierre Gauvin,Vincent Dumez,Ann C. Macaulay,Pascale Lehoux,Julia Abelson +6 more
TLDR
Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.Abstract:
Background Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. Objective Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. Methods We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. Results In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. Conclusion A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.read more
Citations
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Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.
Trisha Greenhalgh,Lisa Hinton,Teresa Finlay,Alastair Macfarlane,Nick Fahy,Ben Clyde,Alan Chant +6 more
TL;DR: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist and are diverse and theoretically heterogeneous.
Journal ArticleDOI
The dark side of coproduction: do the costs outweigh the benefits for health research?
TL;DR: This work summarises the arguments in favour of coproduction, the different approaches to establishing coproductive work and their costs, and proposes some preliminary advice to help decide whenCoproduction is likely to be more or less useful.
Journal ArticleDOI
Evaluating patient and public involvement in research
Antoine Boivin,Tessa Richards,Laura P. Forsythe,Alexandre Grégoire,Audrey L’Espérance,Julia Abelson,Kristin L. Carman +6 more
TL;DR: If the authors are serious about involvement, the international community needs to be equally serious about evaluation.
Journal ArticleDOI
How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field.
Tram Nguyen,Tram Nguyen,Ian D. Graham,Ian D. Graham,Kelly Mrklas,Kelly Mrklas,Sarah Bowen,Margaret Cargo,Carole A. Estabrooks,Anita Kothari,John N. Lavis,Ann C. Macaulay,Martha L. P. MacLeod,David Phipps,Vivian R. Ramsden,Mary J. Renfrew,Jon Salsberg,Nina Wallerstein +17 more
TL;DR: This qualitative study is the first to systematically synthesise experts’ perspectives and experiences in a comparison of collaborative research approaches to facilitate conceptual clarity in use, reporting, indexing and communication among researchers, trainees, knowledge users and stakeholders to advance IKT and implementation science.
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Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research.
Marissa Bird,Carley Ouellette,Carly Whitmore,Lin Li,Kalpana Nair,Michael McGillion,Michael McGillion,Jennifer Yost,Laura Banfield,Elaine Campbell,Sandra L Carroll,Sandra L Carroll +11 more
TL;DR: Patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams, and impact is rarely measured.
References
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Lost in knowledge translation: time for a map?
Ian D. Graham,Jo Logan,Margaret B. Harrison,Sharon E. Straus,Jacqueline Tetroe,Wenda Caswell,Nicole Robinson +6 more
TL;DR: The implications of knowledge translation for continuing education in the health professions include the need to base continuing education on the best available knowledge, the use of educational and other transfer strategies that are known to be effective, and the value of learning about planned‐action theories to be better able to understand and influence change in practice settings.
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Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies
Kristin L. Carman,Pam Dardess,Maureen Maurer,Shoshanna Sofaer,Karen Adams,Christine Bechtel,Jennifer Sweeney +6 more
TL;DR: The levels at which patient engagement can occur across the health care system are discussed, from the direct care setting to incorporating patient engagement into organizational design, governance, and policy making.
Journal ArticleDOI
Patient engagement in research: a systematic review
Juan Pablo Domecq,Gabriela Prutsky,Tarig Elraiyah,Zhen Wang,Mohammed Nabhan,Nathan D. Shippee,Juan P. Brito,Kasey R. Boehmer,Rim Hasan,Rim Hasan,Belal Firwana,Belal Firwana,Patricia J. Erwin,David T. Eton,Jeff A. Sloan,Victor M. Montori,Noor Asi,Abd Moain Abu Dabrh,Mohammad Hassan Murad +18 more
TL;DR: Patient engagement in healthcare research is likely feasible in many settings but can become tokenistic and research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.