Literature DB >> 19963299

Public involvement at the design stage of primary health research: a narrative review of case examples.

Jonathan Boote1, Wendy Baird, Claire Beecroft.   

Abstract

OBJECTIVE: To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies.
DESIGN: Systematic literature search and narrative review.
FINDINGS: Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified.
CONCLUSIONS: The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

Entities:  

Mesh:

Year:  2009        PMID: 19963299     DOI: 10.1016/j.healthpol.2009.11.007

Source DB:  PubMed          Journal:  Health Policy        ISSN: 0168-8510            Impact factor:   2.980


  87 in total

1.  'But is it a question worth asking?' A reflective case study describing how public involvement can lead to researchers' ideas being abandoned.

Authors:  Jonathan D Boote; Mary Dalgleish; Janet Freeman; Zena Jones; Marianne Miles; Helen Rodgers
Journal:  Health Expect       Date:  2012-05-31       Impact factor: 3.377

Review 2.  Lessons Learned from Developing a Patient Engagement Panel: An OCHIN Report.

Authors:  Jill Arkind; Sonja Likumahuwa-Ackman; Nate Warren; Kay Dickerson; Lynn Robbins; Kathy Norman; Jennifer E DeVoe
Journal:  J Am Board Fam Med       Date:  2015 Sep-Oct       Impact factor: 2.657

3.  Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS).

Authors:  Jonathan D Boote; Maureen Twiddy; Wendy Baird; Yvonne Birks; Clare Clarke; Daniel Beever
Journal:  Health Expect       Date:  2013-10-01       Impact factor: 3.377

4.  Can the impact of public involvement on research be evaluated? A mixed methods study.

Authors:  Rosemary Barber; Jonathan D Boote; Glenys D Parry; Cindy L Cooper; Philippa Yeeles; Sarah Cook
Journal:  Health Expect       Date:  2011-02-17       Impact factor: 3.377

5.  The balANZ study--strengthening the evidence for neutral-pH solutions low in glucose degradation products.

Authors:  Martin Wilkie
Journal:  Perit Dial Int       Date:  2012 Sep-Oct       Impact factor: 1.756

Review 6.  'Talking the talk or walking the walk?' A bibliometric review of the literature on public involvement in health research published between 1995 and 2009.

Authors:  Jonathan Boote; Ruth Wong; Andrew Booth
Journal:  Health Expect       Date:  2012-10-04       Impact factor: 3.377

7.  Consumer involvement in systematic reviews of comparative effectiveness research.

Authors:  Julia Kreis; Milo A Puhan; Holger J Schünemann; Kay Dickersin
Journal:  Health Expect       Date:  2012-03-06       Impact factor: 3.377

Review 8.  The Benefits of Patient Involvement for Translational Research.

Authors:  Lieke van der Scheer; Elisa Garcia; Anna Laura van der Laan; Simone van der Burg; Marianne Boenink
Journal:  Health Care Anal       Date:  2017-09

9.  The impact of patient and public involvement in the work of the Dementias & Neurodegenerative Diseases Research Network (DeNDRoN): case studies.

Authors:  Steve Iliffe; Terry McGrath; Douglas Mitchell
Journal:  Health Expect       Date:  2011-09-08       Impact factor: 3.377

10.  User-Centered Design for Psychosocial Intervention Development and Implementation.

Authors:  Aaron R Lyon; Kelly Koerner
Journal:  Clin Psychol (New York)       Date:  2016-06-17
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