Assessing the extent to which current clinical research is consistent with patient priorities: A scoping review using a case study in patients on or nearing dialysis

Canadian Journal of Kidney Health and Disease

Volumn 2, Issue 1, 2015, Pages

  Jun, Min ^a   Manns, Braden ^a,b   Laupacis, Andreas ^c,d   Manns, Liam ^a   Rehal, Bhavdeep ^a   Crowe, Sally ^e   Hemmelgarn, Brenda R ^a,b  

^a UNIVERSITY OF CALGARY   (Canada)

^b UNIVERSITY OF CALGARY   (Canada)

^c ST MICHAEL'S HOSPITAL   (Canada)

^d UNIVERSITY OF TORONTO   (Canada)

^e Oriel College Oxford   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CLINICAL RESEARCH; CONSUMER; DIALYSIS; DIET RESTRICTION; EXERCISE; FUNDING; HEALTH CARE SYSTEM; HUMAN; KIDNEY TRANSPLANTATION; MEDICAL LITERATURE; PRIORITY JOURNAL; PUBLICATION; REGISTER; RESEARCH PRIORITY;

EID: 84998887152     PISSN: None     EISSN: 20543581     Source Type: Journal    
DOI: 10.1186/s40697-015-0070-9     Document Type: Article

References (36)

1. Canadian Institutes of Health Research. Canada's Strategy for Patient-Oriented Research. Available at http://www.cihr-irsc.gc.ca/e/44000.html#a1.1. Accessed July 21, 2015.
2. Fleurence R, Selby JV, Odom-Walker K, Hunt G, Meltzer D, Slutsky JR, et al. How the Patient-Centered Outcomes Research Institute is engaging patients and others in shaping its research agenda. Health Aff. 2013;32(2):393-400.
3. Patient-Centered Outcomes Research Institute. Patient-Centered Outcomes Research. Available at http://www.pcori.org/research-results/patient-centered-outcomes-research. Accessed 17 Aug, 2015.
4. Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gulmezoglu AM, et al. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383(9912):156-65.
5. Ong BN, Hooper H. Involving users in low back pain research. Health Expect. 2003;6(4):332-41.
6. Caron-Flinterman JF, Broerse JE, Teerling J, Bunders JF. Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands. Health Expect. 2005;8(3):253-63.
7. Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. Lancet. 2000;355(9220):2037-40.
8. Manns B, Hemmelgarn BR, Lillie E, Dip SC, Cyr A, Gladish M, et al. Setting research priorities for patients on or nearing dialysis. Clin J Am Soc Nephrol. 2014;9(10):1813-21.
9. James Lind Alliance. JLA Method. Available at http://www.lindalliance.org/JLA_Method.asp. Accessed 21 July, 2015.
10. Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5:69.
11. Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas. 1960;20(1):37.
12. Kidney Research UK. Patients at the heart of research - patients' survey. 2013. Available at http://www.kidneyresearchuk.org/file/research/Patient-SurveyEmail.pdf. Accessed July 21, 2015.
13. Tong A. Exploring research priorities in chronic kidney disease. Available at http://www.cochrane-renal.org/docs/CKDprioritiesworkshop_summaryreport_FINAL_140414lowres.pdf. Accessed 17 Aug, 2015.
14. Tong A, Chando S, Crowe S, Manns B, Winkelmayer WC, Hemmelgarn B, et al. Research priority setting in kidney disease: a systematic review. Am J Kidney Dis. 2015;65(5):674-83.
15. Mehrotra R, Agarwal A, Bargman JM, Himmelfarb J, Johansen KL, Watnick S, et al. Kidney Research National Dialogue (KRND): dialysis therapies: a national dialogue. Clin J Am Soc Nephrol. 2014;9:812-4.
16. Rys-Sikora KE, Ketchum CJ, Star RA, Kidney Research National Dialogue (KRND) Editorial Board. Kidney research national dialogue overview and commentary. Clin J Am Soc Nephrol. 2013;8:1599-602.
17. Oliver S, Gray J. A bibliography of research reports about patients', clinicians, and researchers' priorities for new research. London, UK: James Lind Alliance; 2006. Available at http://www.lindalliance.org/pdfs/JLA_Oliver%20and%20Gray%20report%2007_01_20.pdf. Accessed July 21, 2015.
18. Crowe S, Fenton M, Hall M, Cowan K, Chalmers I. Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch. Res Involvement Engagement. 2015;1(2):1-10.
19. Cykert S, Kissling G, Hansen CJ. Patient preferences regarding possible outcomes of lung resection. What outcomes should preoperative evaluations target? Chest. 2000;117:1551-9.
20. Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. BMJ. 2001;322:519-23.
21. Staley K, Hanley B. Scoping research priority setting, and the presence of patient and public involvement, with UK clinical research organisations and funders. http://www.lindalliance.org/Scoping_research_priority_setting_PPI.asp. Accessed July 21, 2015.
22. Gillum LA, Gouveia C, Dorsey ER, Pletcher M, Mathers CD, McCulloch CE, et al. NIH disease funding levels and burden of disease. PLoS One. 2011;6(2), e16837.
23. Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implement Sci. 2014;9:24.
24. Stevens LA, Levin A. Translating research findings of chronic kidney disease management to clinical practice: challenges and opportunities. Adv Ren Replace Ther. 2004;11(1):66-75.
25. Frank L, Basch E, Selby JV. The PCORI Perspective on Patient-Centered Outcomes Research. JAMA. 2014;312(15):1513-4.
26. INVOLVE. http://www.invo.org.uk/about-involve/. Accessed July 21, 2015.
27. Patient-Centered Outcomes Research Institute. How we're funded. http://www.pcori.org/about-us/how-were-funded/. Accessed July 21, 2015.
28. INVOLVE. INVOLVE Strategy 2012-2015. http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEStrategy2012-15.pdf. Accessed July 21, 2015.
29. INVOLVE. INVOLVE Work plan 2013-2016. http://www.invo.org.uk/wp-content/uploads/2015/01/Updated-INVOLVE-work-plan-2013-2016-Sept-2014.pdf. Accessed July 21, 2015.
30. Patient-Centered Outcomes Research Institute. PCORI patient and family engagement rubric. http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf. Accessed 17 Aug, 2015.
31. INVOLVE. Exploring the impact of public involvement on the quality of research: examples. Eastleigh, UK: INVOLVE; 2013.
32. Staley K. Exploring impact: Public involvement in NHS, public health and socia care research. Eastleigh, UK: INVOLVE; 2009.
33. Pollock A, St George B, Fenton M, Crowe S, Firkins L. Development of a new model to engage patients and clinicians in setting research priorities. J Health Serv Res Policy. 2014;19(1):12-8.
34. Batchelor JM, Ridd MJ, Clarke T, Ahmed A, Cox M, Crowe S, et al. The Eczema Priority Setting Partnership: a collaboration between patients, carers, clinicians and researchers to identify and prioritize important research questions for the treatment of eczema. Br J Dermatol. 2013;168(3):577-82.
35. Buckley BS, Grant AM, Glazener CM. Case study: a patient-clinician collaboration that identified and prioritized evidence gaps and stimulated research development. J Clin Epidemiol. 2013;66(5):483-9.
36. Lophatananon A, Tyndale-Biscoe S, Malcolm E, Rippon HJ, Holmes K, Firkins LA, et al. The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participation. BJU Int. 2011;108(7):1040-3.