A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress

Research Involvement and Engagement

Volumn 2, Issue 1, 2016, Pages

  Bagley, Heather J ^a   Short, Hannah ^a   Harman, Nicola L ^a   Hickey, Helen R ^a   Gamble, Carrol L ^a   Woolfall, Kerry ^a   Young, Bridget ^a   Williamson, Paula R ^a  

^a UNIVERSITY OF LIVERPOOL   (United Kingdom)

Author keywords

Clinical Trials; Patient and public involvement; Research; Toolkit

Indexed keywords

EID: 85008314169     PISSN: None     EISSN: 20567529     Source Type: Journal    
DOI: 10.1186/s40900-016-0029-8     Document Type: Article

References (37)

1. INVOLVE – What is public involvement in research? http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/. Accessed 7 July 2015.
2. Public Involvement Impact Assessment Framework (PiiAF) http://piiaf.org.uk/resources.php. Accessed 9 March 2016.
3. De Wit M, Abma T, Koelewijn-van Loon M, et al. Involving patient research partners has a significant impact on outcomes research: A responsive evaluation of the international OMERACT conferences. BMJ Open. 2013;3:5.
4. Staley K. Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE, Eastleigh; 2009. http://www.invo.org.uk/posttypepublication/exploring-impact-public-involvement-in-nhs-public-health-and-social-care-research/. Accessed 7 July 2015.
5. 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. 2014;17:5.
6. Ennis L, Wykes T. Impact of patient involvement in mental health research: Longitudinal study. Br J Psychiatry. 2013;203:5.
7. Domecq J, Prutsky G, Tarig E, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:1.
8. National Institute for Health Research (2015) Going the Extra Mile. https://web.archive.org/web/20150831071513/http://www.nihr.ac.uk/documents/about-NIHR/NIHR-Publications/Extra%20Mile2.pdf. Accessed 19 November 2015.
9. Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP Checklist: Strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011;4:391–9.
10. Petit-Zeman S and Locock L. Health Care: Bring on the Evidence. Nature. 2013;501(7466):160–161.
11. Mathie E, Wilson P, Poland F, et al. Consumer involvement in health research: a UK scoping and survey. Int J Consum Stud. 2014;38:1.
12. Buck D, Gamble C, Dudley L, 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.
13. Gamble C, Dudley L, Allam A, 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;2015:3(39).
14. Boote J, Baird W, Sutton A. Public Involvement in the Design and Conduct of Clinical Trials: A Review. Int J Interdisc Soc Sci. 2011;5:11.
15. Jones E, Williams-Yesson B, Hackett R, et al. Quality of reporting on patient and public involvement within surgical research: a systematic review. Ann Surg. 2015;2015(261):2.
16. UK CRC CTU-http://www.ukcrc-ctu.org.uk/?page=CTURole. Accessed 7 July 2015.
17. Vale C, Thompson L, Murphy C, et al. Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey. Trials. 2012;13.
18. Fitzgibbon J, Baillie J, Simon N, Nelson A. The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit’s model. Patient Prefer Adherence. 2014;8.
19. Snape D, Jacoby A, Kirkham J, et al. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: A modified Delphi study. BMJ Open. 2014;4:6.
20. Evans B, Bedson E, Bell P, et al. Involving service users in trials: developing a standard operating procedure. Trials. 2013;14:1.
21. INVOLVE Budgeting for Involvement & Cost Calculator http://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/. Accessed 9 March 2016.
22. Barac R, Stein S, Bruce B, Barwick M. Scoping review of toolkits as a knowledge translation strategy in health. BMC Med Informa Decis Making. 2014;14:1.
23. Cartwright J, Crowe S. Patient and Public Involvement Toolkit. BMJ Books. 2011.
24. Scottish Health Council. The Participation Toolkit. http://www.scottishhealthcouncil.org/patient__public_ participation/participation_toolkit/the_participation_toolkit.aspx#.VZvZybFwbIU. Accessed 7 July 2015.
25. Nottingham University Hospitals Trust PPI Toolkit, http://www.nuh.nhs.uk/patients-and-visitors/information-for-patients/get-involved/resources-and-publications/. Accessed 7 July 2015.
26. NIHR Clinical Research Network Cancer. Adding Value and Impact: A Toolkit for Consumer Members of Clinical Studies Groups-https://www.crn.nihr.ac.uk/wp-content/uploads/WebVersionNov2014.pdf. Accessed 7 July 2015.
27. INVOLVE Public involvement in clinical trials: Supplement to the briefing notes for researchers http://www.invo. org.uk/posttypepublication/public-involvement-in-clinical-trials/. Accessed 9 March 2016.
28. Medical Research Council Clinical Trials Unit. MRC CTU Consumer Group Guidelines for involving consumers in MRC CTU cancer trials and studies. http://www.ctu.mrc.ac.uk/13706/13710/guidelines_for_involving_consumers_ in_mrc_ctu_cancer_trials_and_studies. Accessed 9 March 2016.
29. Dudley L, Gamble C, Allam A, 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.
30. Conroy E, Harman N, Lane J, et al. Trial Steering Committees in randomised controlled trials: A survey of registered clinical trials units to establish current practice and experiences. Clin Trials. 2015;12(6):664–76. London, England.
31. INVOLVE Briefing note 6: Who should I involve and how should I find people? http://www.invo.org.uk/posttyperesource/how-to-find-people-to-involve/. Accessed 9 March 2016.
32. Department of Health. Best Research for Best Health: a new national health research strategy. London: Department of Health; 2006. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136578/dh_4127152.pdf. Accessed 7 July 2015.
33. National Institute of Health Research: Patient and public involvement. http://www.nihr.ac.uk/funding/pgfar-patient-and-public-involvement.htm. Accessed 7 July 2015.
34. Canadian Institutes of Health Research, Strategy for Patient Oriented Research. 2014. http://www.cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf. Accessed 7 July 2015.
35. National Health and Medical Research Council and Consumers’ Health Forum of Australia. A Model Framework for Consumer and Community Participation in Health and Medical Research. Canberra: Australian Government; 2005 https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/r33.pdf. Accessed 7 July 2015.
36. Frank L, Forsythe L, Ellis L, et al. Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Qual Life Res. 2015;9.
37. Treweek S, Altman D, Bower P, et al. Making randomised trials more efficient: report of the first meeting to discuss the Trial Forge platform. Trials. 2015;16(1):261.