Evaluating patient and public involvement in research

@article{Boivin2018EvaluatingPA,
  title={Evaluating patient and public involvement in research},
  author={Antoine Boivin and Tessa Richards and Laura P. Forsythe and Alexandre Gr{\'e}goire and Audrey L’Esp{\'e}rance and Julia Abelson and Kristin L. Carman},
  journal={British Medical Journal},
  year={2018},
  volume={363}
}
If we are serious about involvement, we need to be equally serious about evaluation 
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References

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Patients’ roles and rights in research
TLDR
Full partnership with patients is essential to any modern research enterprise and in this case, it is vital to improve the quality of life for patients through informed consent and informed consent.
Mapping the impact of patient and public involvement on health and social care research: a systematic review
  • J. Brett, S. Staniszewska, R. Suleman
  • Political Science, Medicine
    Health expectations : an international journal of public participation in health care and health policy
  • 2014
There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.
Evaluating patient and public involvement in health research: from theoretical model to practical workshop
  • A. Gibson, J. Welsman, N. Britten
  • Medicine
    Health expectations : an international journal of public participation in health care and health policy
  • 2017
TLDR
A four‐dimensional theoretical framework for understanding the dynamic interaction of different forms of knowledge, notably lay and professional, in successful PPI is developed.
Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study
  • E. Mathie, H. Wythe, Julia Jones
  • Psychology, Business
    Health expectations : an international journal of public participation in health care and health policy
  • 2018
TLDR
Research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall.
Patient and public engagement in research and health system decision making: A systematic review of evaluation tools
  • A. Boivin, A. L’Espérance, J. Abelson
  • Medicine, Political Science
    Health expectations : an international journal of public participation in health care and health policy
  • 2018
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.
Developing the evidence base of patient and public involvement in health and social care research
TLDR
It is argued that service users should be collaboratively involved in the conceptualization, theorization and development of instruments to measure PPI impact, and the key advantages measurement would bring in strengthening the PPI evidence base.
Evaluating Patient, Family and Public Engagement in Health Services Improvement and System Redesign.
TLDR
This work discusses key concepts and approaches related to evaluation, drawing particular attention to different and potentially competing goals, stakeholders and epistemological entry points.
‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research published between 1995 and 2009
  • J. Boote, R. Wong, A. Booth
  • Political Science, Medicine
    Health expectations : an international journal of public participation in health care and health policy
  • 2015
TLDR
To characterise the literature on public involvement in health research published between 1995 and 2009, the number of publications indicates the importance of public participation in the research process.
‘Is it worth doing?’ Measuring the impact of patient and public involvement in research
  • K. Staley
  • Business
    Research Involvement and Engagement
  • 2015
TLDR
This review reflects on the use of quantitative approaches to evaluating impact and concludes that the statistical evidence is weakened by not paying sufficient attention to the context in which involvement takes place and the way it is carried out.
Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context
TLDR
This commentary examines the prospects for a more critical approach to PPI which addresses context, is evidence-informed and mindful of persistent inequalities in health outcomes, at a time when models of PPI in NHS health research tend to be conceptually vague.
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