Literature DB >> 23107054

'The missing links': understanding how context and mechanism influence the impact of public involvement in research.

Kristina Staley1, Sarah A Buckland, Helen Hayes, Maryrose Tarpey.   

Abstract

INTRODUCTION: It is now more widely recognized that public involvement in research increases the quality and relevance of the research. However, there are also more questions as to exactly how and when involvement brings added value. THE NATURE OF THE CURRENT EVIDENCE OF IMPACT: Based on the findings of recent literature reviews, most reports of public involvement that discuss impact are based on observational evaluations. These usefully describe the context, the type of involvement and the impact. However, the links between these factors are rarely considered. The findings are therefore limited to identifying the range of impacts and general lessons for good practice. Reflecting on the links between context, mechanism and outcome in these observational evaluations identifies which aspects of the context and mechanism could be significant to the outcome. Studies that are more in line with the principles of realistic evaluation can test these links more rigorously. Building on the evidence from observational evaluations to design research that explores the 'missing links' will help to address the question 'what works best, for whom and when'.
CONCLUSIONS: We conclude that a more intentional and explicit exploration of the links between context, mechanism and outcome, applying the principles of realistic evaluation to public involvement in research, should lead to a more sophisticated understanding of the factors that increase or decrease the likelihood of positive outcomes. This will support the development of more strategic approaches to involvement maximizing the benefits for all involved.
© 2012 John Wiley & Sons Ltd.

Keywords:  evidence; impact; patient and public involvement; public involvement; realistic evaluation

Mesh:

Year:  2012        PMID: 23107054      PMCID: PMC5060928          DOI: 10.1111/hex.12017

Source DB:  PubMed          Journal:  Health Expect        ISSN: 1369-6513            Impact factor:   3.377


  13 in total

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Authors:  Eva Elliott; Alison J Watson; Ursula Harries
Journal:  Health Expect       Date:  2002-06       Impact factor: 3.377

2.  'What difference does it make?' Finding evidence of the impact of mental health service user researchers on research into the experiences of detained psychiatric patients.

Authors:  Steven Gillard; Rohan Borschmann; Kati Turner; Norman Goodrich-Purnell; Kathleen Lovell; Mary Chambers
Journal:  Health Expect       Date:  2010-06       Impact factor: 3.377

3.  Mental health users' experiences of being interviewed by another user in a research project. A qualitative study.

Authors:  A Bengtsson-Tops; B Svensson
Journal:  J Ment Health       Date:  2010-06

4.  Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study.

Authors:  Antje Lindenmeyer; Hilary Hearnshaw; Jackie Sturt; Ralph Ormerod; Geoff Aitchison
Journal:  Health Expect       Date:  2007-09       Impact factor: 3.377

5.  Patients and professionals as research partners: challenges, practicalities, and benefits.

Authors:  Sarah Hewlett; Maarten de Wit; Pam Richards; Enid Quest; Rod Hughes; Turid Heiberg; John Kirwan
Journal:  Arthritis Rheum       Date:  2006-08-15

Review 6.  Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice.

Authors:  Elizabeth Smith; Fiona Ross; Sheila Donovan; Jill Manthorpe; Sally Brearley; John Sitzia; Peter Beresford
Journal:  Int J Nurs Stud       Date:  2006-12-11       Impact factor: 5.837

7.  Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey.

Authors:  B Hanley; A Truesdale; A King; D Elbourne; I Chalmers
Journal:  BMJ       Date:  2001-03-03

8.  Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants' understanding.

Authors:  Peter Guarino; Diana Elbourne; James Carpenter; Peter Peduzzi
Journal:  Clin Trials       Date:  2006       Impact factor: 2.486

Review 9.  Quality improvement report: Improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study. Commentary: presenting unbiased information to patients can be difficult.

Authors:  Jenny Donovan; Nicola Mills; Monica Smith; Lucy Brindle; Ann Jacoby; Tim Peters; Stephen Frankel; David Neal; Freddie Hamdy
Journal:  BMJ       Date:  2002-10-05

Review 10.  Uncovering the benefits of participatory research: implications of a realist review for health research and practice.

Authors:  Justin Jagosh; Ann C Macaulay; Pierre Pluye; Jon Salsberg; Paula L Bush; Jim Henderson; Erin Sirett; Geoff Wong; Margaret Cargo; Carol P Herbert; Sarena D Seifer; Lawrence W Green; Trisha Greenhalgh
Journal:  Milbank Q       Date:  2012-06       Impact factor: 4.911

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  35 in total

1.  Addressing Deficits and Injustices: The Potential Epistemic Contributions of Patients to Research.

Authors:  Katrina Hutchison; Wendy Rogers; Vikki A Entwistle
Journal:  Health Care Anal       Date:  2017-12

2.  Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.

Authors:  Alison Rouncefield-Swales; Jane Harris; Bernie Carter; Lucy Bray; Toni Bewley; Rachael Martin
Journal:  PLoS One       Date:  2021-06-09       Impact factor: 3.240

3.  Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards.

Authors:  Sevgi E Fruytier; Lidewij Eva Vat; Rob Camp; François Houÿez; Hilde De Keyser; Denise Dunne; Davide Marchi; Laura McKeaveney; Richard H Pitt; Carina A C M Pittens; Meagan F Vaughn; Elena Zhuravleva; Tjerk Jan Schuitmaker-Warnaar
Journal:  J Patient Cent Res Rev       Date:  2022-01-17

4.  Involving older people in a multi-centre randomised trial of a complex intervention in pre-hospital emergency care: implementation of a collaborative model.

Authors:  Marina Koniotou; Bridie Angela Evans; Robin Chatters; Rachael Fothergill; Christopher Garnsworthy; Sarah Gaze; Mary Halter; Suzanne Mason; Julie Peconi; Alison Porter; A Niroshan Siriwardena; Alun Toghill; Helen Snooks
Journal:  Trials       Date:  2015-07-10       Impact factor: 2.279

5.  Involving patients in research: considering good practice.

Authors:  Rachael Gooberman-Hill; Amanda Burston; Emma Clark; Emma Johnson; Sharon Nolan; Victoria Wells; Lizzy Betts
Journal:  Musculoskeletal Care       Date:  2013-12

6.  Evaluation of public involvement in research: time for a major re-think?

Authors:  Natalie Edelman; Duncan Barron
Journal:  J Health Serv Res Policy       Date:  2015-10-27

7.  Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool.

Authors:  Julia Abelson; Kathy Li; Geoff Wilson; Kristin Shields; Colleen Schneider; Sarah Boesveld
Journal:  Health Expect       Date:  2015-06-25       Impact factor: 3.377

8.  Involving service users in trials: developing a standard operating procedure.

Authors:  Bridie Angela Evans; Emma Bedson; Philip Bell; Hayley Hutchings; Lesley Lowes; David Rea; Anne Seagrove; Stefan Siebert; Graham Smith; Helen Snooks; Marie Thomas; Kym Thorne; Ian Russell
Journal:  Trials       Date:  2013-07-17       Impact factor: 2.279

9.  The impact of advertising patient and public involvement on trial recruitment: embedded cluster randomised recruitment trial.

Authors:  Adwoa Hughes-Morley; Mark Hann; Claire Fraser; Oonagh Meade; Karina Lovell; Bridget Young; Chris Roberts; Lindsey Cree; Donna More; Neil O'Leary; Patrick Callaghan; Waquas Waheed; Peter Bower
Journal:  Trials       Date:  2016-12-08       Impact factor: 2.279

10.  A devolved model for public involvement in the field of mental health research: case study learning.

Authors:  Pam Moule; Rosie Davies
Journal:  Health Expect       Date:  2015-11-16       Impact factor: 3.377

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