Innovating public engagement and patient involvement through strategic collaboration and practice

被引:47
作者
Holmes L. [1 ]
Cresswell K. [1 ]
Williams S. [1 ]
Parsons S. [1 ]
Keane A. [1 ]
Wilson C. [1 ]
Islam S. [1 ]
Joseph O. [1 ]
Miah J. [1 ]
Robinson E. [1 ]
Starling B. [1 ]
机构
[1] Public Programmes Team, Manchester University NHS Foundation Trust, Nowgen Centre, 29 Grafton Street, Manchester
基金
英国惠康基金;
关键词
Diversity; Health research; Inclusion; Patient and public involvement; Public engagement;
D O I
10.1186/s40900-019-0160-4
中图分类号
学科分类号
摘要
Background: Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. Methods: This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice - a 'cycle' of engagement and involvement - innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. Results: Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. Conclusions: Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice - the 'cycle' of engagement and involvement - is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem. © 2019 The Author(s).
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共 27 条
[1]  
Going the Extra Mile-Improving the Nation's Health and Wellbeing through Public Involvement in Research
[2]  
Wynne B., Public engagement as a means of restoring public trust in science - Hitting the notes, but missing the music?, Community Genetics, 9, pp. 211-220, (2006)
[3]  
Weldon S., Public Engagement in Genetics: A Review of Current Practice in the UK, (2004)
[4]  
Gibbons M., Limoges C., Nowotny H., Schwartzman S., Scott P., Trow M., The New Production of Knowledge: The Dynamics of Science and Research in Contemporary Societies, (1994)
[5]  
Nowotny H., Scott P., Gibbons M., Re-thinking Science: Knowledge and the Public in An Age of Uncertainty, (2001)
[6]  
National Coordinating Centre for Public Engagement
[7]  
British Science Association Audience Map Work
[8]  
Finegold P., Mathieson K., Holmes L., Boon M., Cottle M., Donnai D., Middleton-Price H., Is the UK public ready for genetic medicine?, Personalized Med, 5, pp. 65-76, (2008)
[9]  
Parsons S., Thomson W., Cresswell K., Starling B., McDonagh J.E., What do young people with rheumatic conditions in the UK think about research involvement? A qualitative study, Pediatr Rheumatol Online J, 16, (2018)
[10]  
Parsons S., Starling B., Mullan-Jensen C., Tham Su.-G., Warner K., Wever K., What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study, BMJ Open, 6, 1, (2016)