A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges

Research Involvement and Engagement

Volumn 2, Issue 1, 2016, Pages

  Mockford, Carole ^a   Murray, Matt ^b   Seers, Kate ^a   Oyebode, Jan ^c   Grant, Richard ^d   Boex, Sue ^b   Staniszewska, Sophie ^a   Diment, Yvonne ^b   Leach, Jim ^e   Sharma, Uma ^d   Clarke, Rosemary ^d   Suleman, Rashida ^d  

^a UNIVERSITY OF WARWICK   (United Kingdom)

^b ALZHEIMER'S SOCIETY   (United Kingdom)

^c UNIVERSITY OF BRADFORD   (United Kingdom)

^d UNIVERSITY OF WARWICK   (United Kingdom)

^e Patient and Public Action Group   (United Kingdom)

Author keywords

Dementia; Health research; Lay co researchers; Memory loss; NHS Trust approval; Payment setting; Service users

Indexed keywords

EID: 85032271039     PISSN: None     EISSN: 20567529     Source Type: Journal    
DOI: 10.1186/s40900-016-0021-3     Document Type: Article

References (15)

1. Department of Health. Best Research for Best Health. London:Department of Health; 2006.
2. Gauvin F-P et al. “It all depends”: Conceptualizing public involvement in the context of health technology assessment agencies. Soc Sci Med. 2010;70:1518–26.
3. Boivin ACK, Fervers B, Gracia J, James M, Marshall C, Sakala C, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Safety Health Care. 2010;19(5):e22. doi:10.1136/qshc.2009.034835.
4. INVOLVE, http://www.invo.org.uk/. accessed 28/01/16
5. National Institute for Health Research (NIHR). Going the Extra Mile: Improving the Nation's Health and Wellbeing through Public Involvement in Research. London:NIHR; 2015.
6. Brett J et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient-Patient Centred Outcomes Res. 2014;7(4):387–95.
7. Davies R, Evans D. Public Involvement in Research: How can organisations collaborate to improve involvement? University of West of England; 2010
8. Rose D. The contemporary state of service-user-led research. Lancet Psychiatry. 2015;2(11):959–60.
9. Alzheimer's Society Research Network www.alzheimers.org.uk/researchnetwork
10. Rickard W, Purtell R. Finding a way to pay in the UK: methods and mechanisms for paying service users involved in research. Disability Soc. 2011;26(1):33–48.
11. Ives J, Damery S, Redwod S. PPI, paradoxes and Plato: Who’s sailing the ship? J Med Ethics. 2013;39(3):181–5.
12. Dudley L et al. A little more conversation please? Qualitative study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials. Trials. 2015;16:190. doi:10.1186/s13063-015-0667-4.
13. Research Council UK. Policy and Guidelines on Governance of Good Research Practice. 2013 updated July 2015 http://www.rcuk.ac.uk/RCUK-prod/assets/documents/reviews/grc/RCUKPolicyandGuidelinesonGovernanceofGoodResearchPracticeFebruary2013. Last accessed 16/12/15.
14. UK Research Integrity Office. Code of Practice for Research-Promoting good practice and preventing misconduct. 2009. http://ukrio.org/publications/code-of-practice-for-research/. Last accessed 16/12/15
15. National Institute for Health Research. Patient and Public Involvement in Health and Social Care research: a handbook for researchers.http://www.nihr.ac.uk/funding/how-we-can-help-you/RDS-PPI-Handbook-2014-v8-FINAL. pdf. Last accessed 16/12/15.