Editorials

The rights of patients in research

Clinical trials cannot be done without patients, and the whole purpose of conducting trials is to benefit patients. These two indisputable statements should mean that patients should be at the front of researchers' minds when they design, conduct, and report medical research. But they rarely are. Too often patients are forgotten in the complex business of conducting research. We argue that patients should help to decide which research is conducted, help to plan the research and interpret the data, and hear the results before anybody else.

The patients certainly seemed to have been forgotten in the notorious case of the "trial" of the complementary treatment offered to women with breast cancer by the Bristol Cancer Help Centre.¹ The women who had willingly participated in the research knew nothing of the results until they heard on the television news on the evening of 5 September . . . [Full text of this article]

CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?

Relevant Articles

Receiving a summary of the results of a trial: qualitative study of participants' views

Mary Dixon-Woods, Clare Jackson, Kate C Windridge, and Sara Kenyon
BMJ 2006 332: 206-210. [Abstract] [Full Text] [PDF]

Patients often present too late for inclusion in trials

S Dische, D Gibson, M Parmar, M I Saunders, and A Barrett
BMJ 1995 311: 1570. [Extract] [Full Text]

This article has been cited by other articles:

• Tong, A., Sainsbury, P., Carter, S. M., Hall, B., Harris, D. C., Walker, R. G., Hawley, C. M., Chadban, S., Craig, J. C. (2008). Patients' priorities for health research: focus group study of patients with chronic kidney disease. Nephrol Dial Transplant 23: 3206-3214 [Abstract] [Full text]  
• Entwistle, V., Calnan, M., Dieppe, P. (2008). Consumer involvement in setting the health services research agenda: persistent questions of value. J Health Serv Res Policy 13: 76-81 [Abstract] [Full text]  
• Dixon-Woods, M., Jackson, C., Windridge, K. C, Kenyon, S. (2006). Receiving a summary of the results of a trial: qualitative study of participants' views. BMJ 332: 206-210 [Abstract] [Full text]  
• MacNeil, S D, Fernandez, C V (2006). Informing research participants of research results: analysis of Canadian university based research ethics board policies. J. Med. Ethics 32: 49-54 [Abstract] [Full text]  
• Jacoby, A, Rannard, A, Buck, D, Bhala, N, Newton, J L, James, O F W, Jones, D E J (2005). Development, validation, and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis. Gut 54: 1622-1629 [Abstract] [Full text]  
• Langston, A. L, Mccallum, M., Campbell, M. K, Robertson, C., Ralston, S. H (2005). An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clin Trials 2: 80-87 [Abstract]  
• Schwartz, L (2003). Parallel experience: how art and art theory can inform ethics in human research. Med. Humanities 29: 59-64 [Abstract] [Full text]  
• Partridge, A. H., Winer, E. P. (2002). Informing Clinical Trial Participants About Study Results. JAMA 288: 363-365 [Full text]  
• Williamson, C. (2001). What does involving consumers in research mean?. QJM 94: 661-664 [Full text]  
• Goodare, H., Lockwood, S. (1999). Involving patients in clinical research. BMJ 319: 724-725 [Full text]  
• Snowdon, C., Garcia, J., Elbourne, D. (1998). Reactions of participants to the results of a randomised controlled trial: exploratory study. BMJ 317: 21-26 [Abstract] [Full text]  
• Entwistle, V. A, Renfrew, M. J, Yearley, S., Forrester, J., Lamont, T. (1998). Lay perspectives: advantages for health research. BMJ 316: 463-466 [Full text]  
• Dorman, P. J., Waddell, F., Slattery, J., Dennis, M., Sandercock, P. (1997). Are Proxy Assessments of Health Status After Stroke With the EuroQol Questionnaire Feasible, Accurate, and Unbiased?. Stroke 28: 1883-1887 [Abstract] [Full text]  
• Liberati, A. (1997). Consumer participation in research and health care. BMJ 315: 499-499 [Full text]  
• MASON, S. (1997). Obtaining informed consent for neonatal randomised controlled trials---an "elaborate ritual"?. Arch. Dis. Child. Fetal Neonatal Ed. 76: 143F-145 [Full text]  
• Nylenna, M. (1997). Details of patients' consent in studies should be reported. BMJ 314: 1127-1127 [Full text]  
• Hancock, B W, Aitken, M, Radstone, C, Hudson, G V. (1997). Why don't cancer patients get entered into clinical trials? Experience of the Sheffield Lymphoma Group's collaboration in British National Lymphoma Investigation studies. BMJ 314: 36-36 [Full text]  
• Marshall, S. (1996). Participants should be given feedback about the trial. BMJ 312: 186a-186 [Full text]  
• Martin, E. (1996). Training in substance abuse is lacking for GPs. BMJ 312: 186c-187 [Full text]  
• Dische, S, Gibson, D, Parmar, M, Saunders, M I, Barrett, A (1995). Patients often present too late for inclusion in trials. BMJ 311: 1570b-1570 [Full text]