Author:
Jackson Tracy,Pinnock Hilary,Liew Su May,Horne Elsie,Ehrlich Elisabeth,Fulton Olivia,Worth Allison,Sheikh Aziz,De Simoni Anna
Abstract
Abstract
Background
Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered.
Main body
As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of ‘keeping patients at the heart of everything we do’. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion.
Conclusion
With adaptation, the AUKCAR PPI model can be translated to international contexts.
Funder
Asthma UK
National Institute for Health Research
Publisher
Springer Science and Business Media LLC
Reference22 articles.
1. National Institute for Health Research. Our mission and core workstreams. https://www.nihr.ac.uk/about-us/our-mission/our-mission-and-strategic-workstreams.htm. Accessed 22 Jun 2019.
2. National Institute for Health Research | INVOLVE. About INVOLVE. https://www.invo.org.uk/about-involve/. Accessed 22 Jun 2019.
3. Gorsky M. Hospital governance and community involvement in Britain: evidence from before the National Health Service. http://www.historyandpolicy.org/policy-papers/papers/hospital-governance-and-community-involvement-in-britain-evidence-from-befo Accessed 22 June 2019.
4. Kennedy I. Learning from Bristol: The Report of the Public Inquiry into Children's Heart Surgery at the Bristol Royal Infirmary, 1984–95. London: Stationery Office; 2001.
5. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient. 2014;7(4):387–95.
Cited by
88 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献