Literature DB >> 19577849

Involving burn survivors in agenda setting on burn research: an added value?

Jacqueline E W Broerse1, Marjolein B M Zweekhorst, Annemiek J M L van Rensen, Monique J M de Haan.   

Abstract

BACKGROUND AND AIM: The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists. In this article we compare the research priorities of burn survivors and professionals and investigate to what extent it is possible to come to a joint research agenda.
METHODOLOGY: The project followed the Dialogue Model for research agenda setting. Initially burn survivors and professionals were consulted separately and group-specific lists of research priorities were established, using a literature survey, exploratory interviews (n=10), focus groups (n=58), a questionnaire (n=224) and Delphi rounds (n=12). Subsequently, in a dialogue meeting burn survivors and professionals presented and discussed their priorities, developed one integrated list, and prioritized the 15 most important topics on this list.
RESULTS: Considerable overlap was observed between the research priorities of burn survivors and professionals, particularly with respect to biomedical and clinical research on wound healing and scar management. However, differences were also observed, e.g. treatment of itching and oedema on scars and donor places.
CONCLUSION: The model proved useful in eliciting research priorities from both professionals and burn survivors, and in stimulating a meaningful dialogue between these groups. The involvement of burn survivors identified burn research areas that are currently not the focus of research in The Netherlands. Copyright (c) 2009 Elsevier Ltd and ISBI. All rights reserved.

Entities:  

Mesh:

Year:  2009        PMID: 19577849     DOI: 10.1016/j.burns.2009.04.004

Source DB:  PubMed          Journal:  Burns        ISSN: 0305-4179            Impact factor:   2.744


  23 in total

1.  Patient participation as dialogue: setting research agendas.

Authors:  Tineke A Abma; Jacqueline E W Broerse
Journal:  Health Expect       Date:  2010-06       Impact factor: 3.377

2.  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

3.  Interactive learning and action: realizing the promise of synthetic biology for global health.

Authors:  A Wieke Betten; Anneloes Roelofsen; Jacqueline E W Broerse
Journal:  Syst Synth Biol       Date:  2013-07-27

4.  Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives.

Authors:  Janneke E Elberse; J Francisca Caron-Flinterman; Jacqueline E W Broerse
Journal:  Health Expect       Date:  2010-12-22       Impact factor: 3.377

5.  Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting.

Authors:  Tineke A Abma; Carina A C M Pittens; Merel Visse; Janneke E Elberse; Jacqueline E W Broerse
Journal:  Health Expect       Date:  2014-05-30       Impact factor: 3.377

6.  Functional genomics unique to week 20 post wounding in the deep cone/fat dome of the Duroc/Yorkshire porcine model of fibroproliferative scarring.

Authors:  Loren H Engrav; Christopher K Tuggle; Kathleen F Kerr; Kathy Q Zhu; Surawej Numhom; Oliver P Couture; Richard P Beyer; Anne M Hocking; Gretchen J Carrougher; Maria Luiza C Ramos; Matthew B Klein; Nicole S Gibran
Journal:  PLoS One       Date:  2011-04-20       Impact factor: 3.240

7.  Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership.

Authors:  Mary Madden; Richard Morley
Journal:  Res Involv Engagem       Date:  2016-04-02

8.  'Is it worth doing?' Measuring the impact of patient and public involvement in research.

Authors:  Kristina Staley
Journal:  Res Involv Engagem       Date:  2015-07-31

9.  Patient involvement in research priorities (PIRE): a study protocol.

Authors:  Karin Piil; Mary Jarden
Journal:  BMJ Open       Date:  2016-05-24       Impact factor: 2.692

Review 10.  Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research.

Authors:  Elizabeth Manafo; Lisa Petermann; Ping Mason-Lai; Virginia Vandall-Walker
Journal:  Health Res Policy Syst       Date:  2018-02-07
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