Including patients in core outcome set development: Issues to consider based on three workshops with around 100 international delegates

Research Involvement and Engagement

Volumn 2, Issue 1, 2016, Pages

  Young, Bridget ^a   Bagley, Heather ^a  

^a UNIVERSITY OF LIVERPOOL   (United Kingdom)

Author keywords

Consensus; Core outcome sets; Patient and public involvement; Patient engagement; Public engagement

Indexed keywords

EID: 85028355007     PISSN: None     EISSN: 20567529     Source Type: Journal    
DOI: 10.1186/s40900-016-0039-6     Document Type: Note

References (24)

1. Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, Tugwell P. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13(1):132.
2. Rimer J, Dwan K, Lawlor DA, Greig CA, McMurdo M, Morley W, Mead GE. Exercise for depression. Cochrane Database Syst Rev. 2012;7(CD004366). doi:10.1002/14651858.CD004366.pub4.
3. Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, Howells DW, Ioannidis JP, Oliver S. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383(9912):156–65.
4. Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. Obstet Gynecol. 2009;114(6):1341–5.
5. Gargon E, Gurung B, Medley N, Altman DG, Blazeby JM, Clarke M, Williamson PR. Choosing important health outcomes for comparative effectiveness research: a systematic review. PLoS One. 2014;9(6):e99111.
6. COMET Initative-Core outcome set plain language summary—involving patients and the public in improving research [http://www.comet-initiative.org/assets/downloads/COMET%20Plain%20Language%20Summary%20v4.pdf]. Accessed 5 July 2016.
7. Kirwan JR, Minnock P, Adebajo A, Bresnihan B, Choy E, De Wit M, Hazes M, Richards P, Saag K, Suarez-Almazor M. Patient perspective: fatigue as a recommended patient centered outcome measure in rheumatoid arthritis. J Rheumatol. 2007;34(5):1174–7.
8. Sinha IP, Gallagher R, Williamson PR, Smyth RL. Development of a core outcome set for clinical trials in childhood asthma: a survey of clinicians, parents, and young people. Trials. 2012;13(1):103.
9. Gorst SL, Gargon E, Clarke M, Blazeby JM, Altman DG, Williamson PR. Choosing Important Health Outcomes for Comparative Effectiveness Research: An Updated Review and User Survey. PloS One 2016;11(1).
10. Harman NL, Bruce IA, Kirkham JJ, Tierney S, Callery P, O’Brien K, Bennett AM, Chorbachi R, Hall PN, Harding-Bell A. The importance of integration of stakeholder views in core outcome set development: Otitis media with effusion in children with cleft palate. PLoS One. 2015;10(6):e0129514.
11. Keeley T, Khan H, Pinfold V, Williamson P, Mathers J, Davies L, Sayers R, England E, Reilly S, Byng R. Core outcome sets for use in effectiveness trials involving people with bipolar and schizophrenia in a community-based setting (PARTNERS2): study protocol for the development of two core outcome sets. Trials. 2015;16(1):47.
12. Tong A, Manns B, Hemmelgarn B, Wheeler DC, Tugwell P, Winkelmayer WC, van Biesen W, Crowe S, Kerr PG, Polkinghorne KR. Standardised outcomes in nephrology–haemodialysis (SONG-HD): study protocol for establishing a core outcome set in haemodialysis. Trials. 2015;16(1):364.
13. Waters A, Tudur Smith C, Young B, Jones TM. The CONSENSUS study: protocol for a mixed methods study to establish which outcomes should be included in a core outcome set for oropharyngeal cancer. Trials. 2014;15(1):168.
14. Whitehead L, Perkins G, Haywood K. ‘Getting back to normal’: using patients’ lived experience to inform a core outcome set for cardiac arrest clinical trials. Trials. 2015;16 Suppl 3:3.
15. Keeley T, Williamson P, Callery P, Jones L, Mathers J, Jones J, Young B, Calvert M. The use of qualitative methods to inform Delphi surveys in core outcome set development. Trials. 2016;17(1):1.
16. National Institute for Health Research-People in Research [(http://www.peopleinresearch.org/)]. Accessed 5 July 2016.
17. INVOLVE [http://www.invo.org.uk/]. Accessed 5 July 2016.
18. Avery K, Chalmers K, Whale K, Blencowe N, Macefield R, Brookes S, Metcalfe C, Blazeby J. The importance of stakeholder selection in core outcome set development: how surveying different health professionals may influence outcome selection. Trials. 2015;16 Suppl 2:47.
19. Macefield R, Blencowe N, Brookes S, Jacobs M, Sprangers M, Williamson P, Blazeby J. Core outcome set development: the effect of Delphi panel composition and feedback on prioritisation of outcomes. Trials. 2013;14 Suppl 1:77.
20. Gargon E, Altman DG, Blazeby JM, Clarke M, Williamson PR. COMET IV meeting summary. Trials. 2015;16 Suppl 1:M1.
21. Mathers J, Keeley T, Jones L, Calvert M, Williamson P, Jones J, McMullan C, Wright S, Young B. Using qualitative research to understand what outcomes matter to patients: direct and indirect approaches to outcome elicitation. Trials. 2015;16 Suppl 2:O39.
22. Cochrane Consumer Network-What is a systematic review? [http://consumers.cochrane.org/what-systematic-review]. Accessed 5 July 2016.
23. Peninsula Cerebra Research Unit-Research Summary [http://www.pencru.org/media/universityofexeter/medicalschool/subsites/pencru/pdfs/Peer_qualitative_study_plain_language_summary.pdf]. Accessed 5 July 2016.
24. COMET Initative-Delphi plain language summary [http://www.comet-initiative.org/assets/downloads/Delphi%20plain%20language%20summary%20for%20COMET%20website.pdf]. Accessed 5 July 2016.