Models and impact of patient and public involvement in studies carried out by the Medical Research Council Clinical Trials Unit at University College London: Findings from ten case studies

Trials

Volumn 17, Issue 1, 2016, Pages

  South, Annabelle ^a   Hanley, Bec ^a   Gafos, Mitzy ^a   Cromarty, Ben ^a,b   Stephens, Richard ^a,c   Sturgeon, Kate ^a   Scott, Karen ^a   Cragg, William J ^a   Tweed, Conor D ^a   Teera, Jacqueline ^a   Vale, Claire L ^a  

^a MEDICAL RESEARCH COUNCIL   (United Kingdom)

^b North Yorkshire AIDS Action   (United Kingdom)

^c INSTITUTE OF CANCER RESEARCH   (United Kingdom)

Author keywords

Clinical trials; Consumer involvement; Patient and public involvement; RCTs; Systematic reviews

Indexed keywords

ADULT; ARTICLE; CASE STUDY; COLLEGE; ENGLAND; FEMALE; GOOD CLINICAL PRACTICE; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INTERPERSONAL COMMUNICATION; INTERVIEW; KIDNEY CANCER; MALE; MEDICAL RESEARCH; MEDICAL SOCIETY; NON SMALL CELL LUNG CANCER; OBSERVATIONAL STUDY; ORGANIZATION; PATIENT AND PUBLIC INVOLVEMENT; PROSTATE CANCER; RANDOMIZED CONTROLLED TRIAL (TOPIC); SYSTEMATIC REVIEW (TOPIC); UNIVERSITY; UTERINE CERVIX CANCER; CLINICAL TRIAL (TOPIC); METHODOLOGY; PATIENT PARTICIPATION;

BIOMEDICAL RESEARCH; CLINICAL TRIALS AS TOPIC; HUMANS; PATIENT PARTICIPATION; RESEARCH DESIGN; UNIVERSITIES;

EID: 84979696877     PISSN: None     EISSN: 17456215     Source Type: Journal    
DOI: 10.1186/s13063-016-1488-9     Document Type: Article

References (26)

1. Boote J, Baird W, Beecroft C. Public involvement at the design stage of primary health research: a narrative review of case examples. Health Policy. 2010;95:10-23.
2. Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H. A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. London: The PIRICOM Study; 2010.
3. Thompson J, Barber R, Ward PR, Boote J, Cooper CL, Armitage CJ, et al. Health researchers' attitudes towards public involvement in health research. Health Expect. 2009;12:209-20.
4. Staley K. Exploring Impact: Public involvement in NHS, public health and social care research. Eastleigh: INVOLVE; 2009.
5. Gamble C, Dudley L, Allam A, Bell P, Buck D, Goodare H, et al. An evidence base to optimise methods for involving patient and public contributors in clinical trials: a mixed-methods study. Health Serv Deliv Res. 2015;3:39.
6. Vale CL, Thompson LC, Murphy C, Forcat S, Hanley B. Involvement of consumers in studies run by the Medical Research Council (MRC) Clinical Trials Unit: results of a survey. Trials. 2012;13(1):9.
7. Staley K. Evidence bibliography 5: references on public involvement in NHS, public health and social care research. Southampton: INVOLVE; 2014.
8. Barber R, Boote J, Cooper CL. Involving consumers successfully in NHS research: a national survey. Health Expect. 2007;10(4):380-91.
9. Buck D, Gamble C, Dudley L, Preston J, Hanley B, Williamson PR, et al. From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials. BMJ Open. 2014;4(12):e006400.
10. Gamble C, Dudley L, Allam A, Bell P, Goodare H, Hanley B, et al. Patient and public involvement in the early stages of clinical trial development: a systematic cohort investigation. BMJ Open. 2014;4(7):e005234.
11. 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. Southampton: Health Services and Delivery Research; 2015.
12. Trial Team DART. Routine versus clinically driven laboratory monitoring of HIV antiretroviral therapy in Africa (DART): a randomised non-inferiority trial. Lancet. 2010;375(9709):123-31.
13. McCormack S, Ramjee G, Kamali A, Rees H, Crook AM, Gafos M, et al. PRO2000 vaginal gel for prevention of HIV-1 infection (Microbicides Development Programme 301): a phase 3, randomised, double-blind, parallel-group trial. Lancet. 2010;376(9749):1329-37.
14. Mulvenna PM, Nankivell MG, Barton R, Faivre-Finn C, Wilson P, Moore B, et al. Whole brain radiotherapy for brain metastases from non-small lung cancer: quality of life (QoL) and overall survival (OS) results from the UK Medical Research Council QUARTZ randomised clinical trial (ISRCTN 3826061). J Clin Oncol. 2015;33(Suppl):8005.
15. James ND, Sydes MR, Clarke NW, Mason MD, Dearnaley DP, Spears MR, et al. Addition of docetaxel, zoledronic acid, or both to first-line long-term hormone therapy in prostate cancer (STAMPEDE): survival results from an adaptive, multiarm, multistage, platform randomised controlled trial. Lancet. 2016;387(10024):1163-77.
16. McCormack S, Dunn DT, Desai M, Dolling DI, Gafos M, Gilson R, et al. Pre-exposure prophylaxis to prevent the acquisition of HIV-1 infection (PROUD): effectiveness results from the pilot phase of a pragmatic open-label randomised trial. Lancet. 2016;387(10013):53-60.
17. Butler K, Inshaw J, Ford D, Bernays S, Scott K, Kenny J, et al. BREATHER (PENTA 16) short-cycle therapy (SCT) (5 days on/2 days off) in young people with chronic human immunodeficiency virus infection: an open, randomised, parallel-group Phase II/III trial. Health Technol Assess. 2016;20(49):1-108.
18. PIVOT Trial Team. PIVOT trial [cited 2015 Dec 15]. Available from: http://www.pivot-trial.org/.
19. SORCE Trial Team. SORCE trial. http://www.ctu.mrc.ac.uk/our_research/research_areas/cancer/studies/sorce/. Accessed 15 Dec 2015.
20. AALPHI Study Team. AALPHI study. http://www.ctu.mrc.ac.uk/our_research/research_areas/hiv/studies/aalphi/. Accessed 2015.
21. Vale CL, Tierney JF, Spera N, Whelan A, Nightingale A, Hanley B. Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment. Syst Rev. 2012;1(1):23.
22. Chemoradiotherapy for Cervical Cancer Meta-analysis Collaboration. Reducing uncertainties about the effects of chemoradiotherapy for cervical cancer: a systematic review and meta-analysis of individual patient data from 18 randomized trials. J Clin Oncol. 2008;26(35):5802-12.
23. Vale CL, Nightingale A, Spera N, Whelan A, Hanley B, Tierney JF. Late complications from chemoradiotherapy for cervical cancer: reflections from cervical cancer survivors 10 years after the national cancer institute alert. Clin Oncol. 2010;22(7):588-9.
24. Evans D, Coad J, Cottrell K, Dalrymple J, Davies R, Donald C, et al. Public involvement in research: assessing impact through a realist evaluation. Health Serv Deliv Res. 2014;2:(36):1-127.
25. Gamble C, Dudley L, Allam A, Bell P, Buck D, Goodare H, et al. An evidence base to optimise methods for involving patient and public contributors in clinical trials: a mixed-methods study. Health Serv Deliv Res. 2015;3:(39):1-142.
26. UNAIDS, AVAC. Good participatory practice: guidelines for biomedical HIV prevention trials. Geneva: UNIADS; 2011.