Public involvement could usefully inform ethical review, but rarely does: What are the implications?

Research Involvement and Engagement

Volumn 3, Issue 1, 2017, Pages

  Staley, Kristina ^a   Elliott, Jim ^b  

^a Montague House   (United Kingdom)

^b Health Research Authority   (United Kingdom)

Author keywords

Ethical review; Patient involvement; Public involvement; Research ethics

Indexed keywords

EID: 85056266828     PISSN: None     EISSN: 20567529     Source Type: Journal    
DOI: 10.1186/s40900-017-0080-0     Document Type: Article

References (22)

1. Research Ethics Service. The Health Research Authority https://www.hra.nhs.uk/about-us/committees-and-services/res-and-recs/. Accessed 28 Nov 2017.
2. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.
3. Health Research Authority/INVOLVE. Impact of public involvement on ethical aspects of research. London: HRA; Southampton: INVOLVE; 2016.
4. Staley K. Lay REC members: patient or public? J Med Ethics. 2013;39:780–2.
5. Staley K, Ashcroft J, Doughty L, Szmukler G. Making it clear and relevant: patients and carers add value to studies through research document reviews. Ment Health Soc Incl. 2016;20(1):36–43.
6. Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, et al. ReseArch with patient and public invOlvement: a RealisT evaluation – the RAPPORT study. Health Services and Delivery Research: Southampton; 2015.
7. Angell E, Bryman A, Ashcroft R, Dixon-Woods M. An analysis of decision letters by research ethics committees: the science/ethics quality boundary examined. Qual Saf Health Care. 2008;17:131–6.
8. Tarpey M. Public involvement in research applications to the National Research Ethics Service. Eastleigh: INVOLVE; 2011.
9. Tarpey M, Bite S. Public involvement in research applications to the National Research Ethics Service: comparative analysis of 2010 and 2012 data. Eastleigh: INVOLVE; 2014.
10. Elliott J, Horwood A, Hunn A, Staley K, Tarpey M. Public involvement in applications to the Health Research Authority Research Ethics Service: Comparative analysis of 2010, 2012 and 2014 data. London: HRA; Southampton: INVOLVE; 2017.
11. McHugh ML. Interrater reliability: the kappa statistic. Biochemia Medica. 2012;22(3):276–82.
12. INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh: INVOLVE; 2012.
13. Staley K. Exploring impact: public involvement in NHS, public health and social care research. Eastleigh: INVOLVE; 2009.
14. Crowe S, Fenton M, Hall M, Cowan K, Chalmers I. Patients’, clinicians and the research communities’ priorities for treatment research: there is an important mismatch. Res Involvement Engagement. 2015;1:2.
15. Health Research Authority, INVOLVE. Public involvement in research and research ethics committee review. London: HRA; Southampton: INVOLVE; 2016.
16. Pandya-Wood R, Barron DS, Elliott J. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards. Res Involvement Engagement. 2017;3:6.
17. Staley K. An evaluation of service user involvement in studies adopted by the Mental Health Research Network. London: MHRN; 2012.
18. Health Research Authority. Transparency, registration and publication. The Health Research Authority. https://www.hra.nhs.uk/planning-and-improving-research/research-planning/publishing-your-research-findings/. Accessed 28 Nov 2017.
19. Littlechild R, Tanner D, Hall K. Co-research with older people: perspectives on impact. Qual Soc Work. 2015;14(1): 18–35.
20. McNichol E, Grimshaw P. An innovative toolkit: increasing the role and value of patient and public involvement in the dissemination of research findings. Int Prac Dev J. 2014;4(1):Article 8.
21. Nuffield Council of Bioethics. Involving children and young people in health research – getting it right. London: Nuffield Council of Bioethics; 2015.
22. INVOLVE. What is public involvement in research? INVOLVE http://www.invo.org.uk/frequently-asked-questions/. Accessed 28 Nov 2017.