The role of the public in developing interventions: A refection and critique of a cancer clinical trials unit’s model

Patient Preference and Adherence

Volumn 8, Issue , 2014, Pages 1527-1535

  Fitzgibbon, Jim ^a   Baillie, Jessica ^a   Simon, Natalie ^b   Nelson, Annmarie ^a  

^a CARDIFF UNIVERSITY SCHOOL OF MEDICINE   (United Kingdom)

^b Involving People   (United Kingdom)

Author keywords

Clinical trials unit; Lay representative; Public involvement

Indexed keywords

ARTICLE; CANCER RESEARCH; CLINICAL STUDY; CLINICAL TRIAL UNIT MODEL; HEALTH CARE PLANNING; HUMAN; MEDICAL AUDIT; MENTAL HEALTH SERVICE; OUTCOMES RESEARCH; PARTICIPATORY RESEARCH; PUBLIC HEALTH SERVICE; SOCIAL CARE; UNITED KINGDOM;

EID: 84908672964     PISSN: None     EISSN: 1177889X     Source Type: Journal    
DOI: 10.2147/PPA.S66734     Document Type: Article

References (35)

1. INVOLVE. INVOLVE Strategy 2012–2015: Putting people first in research. London: National Institute for Health Research; 2012. Available from: http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEStrategy2012–15.pdf. Accessed March 2014.
2. Involving People. About Us. Available from: http://www.wales.nhs.uk/sites3/page.cfm?orgid=1023&pid=59258. Accessed March 2014.
3. Morrow E, Boaz A, Brearley S, et al. Handbook of Service User Involvement in Nursing and Healthcare Research. Chichester: Wiley-Blackwell; 2011.
4. Department of Health. Research governance framework for health and social care. 2nd ed. London: Department of Health; 2005. Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/fle/139565/dh_4122427.pdf. Accessed July 2014.
5. Welsh Assembly Government. Research Governance Framework for Health and Social Care in Wales. 2nd ed. Cardiff, United Kingdom: Wales Offce of Research and Development for Health and Social Care. Available from: http://www.wales.nhs.uk/sites3/documents/952/Research%20Governance%20Framework%202009%20(English)1.pdf. Accessed July 2014.
6. House of Commons Health Committee. Patient and Public Involvement in the NHS. London: The Stationary Offce; 2007.
7. United Kingdom. National Health Service Act 2006. Available from: http://www.legislation.gov.uk/ukpga/2006/41/contents. Accessed July 2014.
8. Department of Health. Equity and Excellence: Liberating the NHS. London: Department of Health; 2010. Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/fle/213823/dh_117794.pdf. Accessed July 2014.
9. Torrance C, Wilson C. Consumer, user and carer involvement in health and social care [editorial]. Int J Consum Stud. 2010;34(5):493–494.
10. Beresford P. The theory and philosophy behind user involvement. In: Beresford P, Carr S, eds. Social Care, Service Users and User Involvement. London: Jessica Kingsley Publishers; 2012:21–36.
11. Croft S, Beresford P. The politics of participation. In: Taylor D, ed. Critical Social Policy: A Reader. London: Sage; 1996:175–198.
12. Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy. 2002;61(2):213–236.
13. Macaulay AC, Commanda LE, Freeman WL, et al; North American Primary Care Research Group. Participatory research maximises community and lay involvement. BMJ. 1999;319(7212):774–778.
14. Boote J, Baird W, Sutton A. Public involvement in the systematic review process in health and social care: a narrative review of case examples. Health Policy. 2011;102(2–3):105–116.
15. International Collaboration for Participatory Health Research. Available from: http://www.icphr.org/. Accessed July 2014.
16. INVOLVE. Briefing note eight: Ways that people can be involved in the research cycle. Available from: http://www.invo.org.uk/posttyper-esource/where-and-how-to-involve-in-the-research-cycle/. Accessed April 2013.
17. Tischler V, D’Silva K, Cheetham A, Goring M, Calton T. Involving patients in research: the challenge of patient-centredness. Int J Soc Psychiatry. 2010;56(6):623–633.
18. Barber R, Beresford P, Boote J, Cooper C, Faulkner A. Evaluating the impact of service user involvement on research: a prospective case study. Int J Consum Stud. 2011;35(6):609–615.
19. Smith E, Donovan S, Beresford P, et al. Getting ready for user involvement in a systematic review. Health Expect. 2009;12(2):197–208.
20. Wilson C, Fothergill A, Rees H. A potential model for the frst all Wales mental health service user and carer-led research group. J Psychiatr Ment Health Nurs. 2010;17(1):31–38.
21. Morrow E, Ross F, Grocott P, Bennett J. A model and measure for quality service user involvement in health research. Int J Consum Stud. 2010;34(5):532–539.
22. INVOLVE. People and participation: How to put citizens at the heart of decision making. Available from: http://www.involve.org.uk/wp-content/uploads/2011/03/People-and-Participation.pdf. Accessed July 2014.
23. Cotterell P, Harlow G, Morris C, et al. Service user involvement in cancer care: the impact on service users. Health Expect. 2011;14(2):159–169.
24. Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. Epub 19 Jul 2012.
25. Porteous C, Rea D. Involving People/Cynnwys Pobl: An internal evaluation of infrastructure support for active involvement in health and social care research in Wales. Cardiff: Involving People/Cynnwys Pobl; 2009.
26. Cancer Research UK. Cancer Research UK’s Research Strategy 2009/10 – 2013/14. London: Cancer Research UK; 2008. Available from: http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@fre/@gen/documents/generalcontent/research-strategy-dnld-version.pdf. Accessed July 2014.
27. National Cancer Research Institute. Involving patients and the public in research. Available from: http://www.ncri.org.uk/default.asp?s=1&p=11:2013. Accessed.
28. Nelson A, Byrne A, Griffths G, et al. Valuing patient experience in the Wales Cancer Trials Unit: an action research project of credible patient involvement. Marie Curie Cancer Care Annual Research Conference; London; 2009.
29. Woodward A, Fitzgibbon J, Nelson A. Public and patient involvement: Experiences of a Registered Research Group and a Trials Unit. Involving People Annual Meeting; February 2011; Swansea, UK.
30. Fitzgibbon J, Simon N, Nelson A. Research Partner Coordinator at the Wales Cancer Trials Unit: A cuckoo in the nest? INVOLVE 2012 Conference: Putting people frst in research; November 2012; Nottingham, UK.
31. Vale C, Fitzgibbon J, Hanley B, et al. Public involvement in clinical trials: Supplement to the briefng notes for researchers. Eastleigh, United Kingdom; INVOLVE; 2012. Available from: http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEpublicinvolvementinclinicaltrialsBriefngnotes2012.pdf. Accessed March 2012.
32. Neal R, Hurt C, Roberts K, et al. The ELCID Trial: A feasibility randomised control trial looking at the effect on lung cancer diagnosis of giving a Chest X-Ray to smokers aged over 60 with new chest symptoms. National Awareness and Early Diagnosis Initiative Research Conference; Cambridge Research Institute, UK; 2013.
33. Smith JD, Baillie J, Baglin T, et al. A feasibility study to inform the design of a randomized controlled trial to identify the most clinically and cost effective anticoagulation length with low molecular weight heparin in the treatment of cancer associated thrombosis (ALICAT): study protocol for a mixed-methods study. Trials. 2014;15(1):122.
34. Trial Forge. Trial Forge: A systematic approach to making trials more effcient. Available from: http://nebula.wsimg.com/dc736e8283c135ddb0e4f76bad683e62?AccessKeyId=FFE129220DD76BFA83F4&disposition=0&alloworigin=1. Accessed July 2014.
35. Barber R, Boote JD, Parry GD, Cooper C., Yeeles P, Cook S. Can the impact of public involvement on research be evaluated? A mixed methods study. Health Expect. 2012;15(3):229–241.