Godlee asks “whether our main challenge will be just keeping up with the speed of change.” [1] She draws attention to Wicks et al`s assertion that “when it comes to clinical trials some patients are already well ahead of the game.”[2] : this is not new.
Twenty two years ago, in 1992, the BMJ drew attention to the influence of the AIDS activists in taking matter into their own hands. [3] In 1994/5 this incident was recounted at a Lancet conference in Bruges, and published in a Government Health Select Committee Report [4] :
“The United Kingdom, like the United States, has seen patient participation and involvement in AIDS trials, thus leading the way. Patients have a rôle to play by advocating to trialists that what they view as havoc being cause by organised well-informed patients (as we saw in The States) was in fact a challenge to the trialists` interpretation of the uncertainty principle which had ignored the patients` preferred outcomes.[3] The resultant compassionate release of a “promising” new AIDS drug, rejecting the discipline of the proper and best method of evaluation, demonstrated more forcibly to the patients than any imposition of a trial, the folly of such demands and hasty judgement of efficacy. Trialists might argue that this prolonged the agony for current and future patients, but those involved patients might argue that it hastened the understanding of both patient and trialist about the need for unhurried, controlled evaluation of interventions within a well-designed trial, designed jointly to take into account both parties` needs, based on a recognition of everyone`s responsibilities in the matter. The benefit of the involvement of a healthy public in debating these issues cannot be over-emphasised.” [5]
I believe we need to remember to learn from history and evolve rather than 'revolve'. [6]
[1] Godlee, F. Towards the patient revolution. BMJ 2014;348:g1209
[2] Wicks P, Vaughan T, Haywood J. Subjects no more: what happens when trial participants realize they hold the power? BMJ 2014;348:g368
[3] Institute of Medical Ethics Working Party. AIDS, ethics and clinical trials. BMJ 1992; 305:699-701
[4] Thornton H. “The patient`s role in research”. (Paper given at The Lancet “Challenge of Breast Cancer” Conference, Brugge, April 1994.) In Health Committee Third Report. Breast Cancer Services. Volume II. Minutes of Evidence and Appendices. London HMSO July 1995. 112-114.
[5] Baum, M. “New approach for recruitment into randomised controlled trials.” The Lancet 1993; 341;812-814
[6] Thornton H. Empowerment is inappropriate for equal citizens. Letter: BMJ 2013;346:f3573 doi: 101136/bmj.f3573 4th June 2013 http://bmj.com/cgi/content/full/bmj.f3573
Competing interests:
No competing interests
31 January 2014
Hazel Thornton
Honorary Visiting Fellow, Department of Health Sciences
Rapid Response:
Re: Towards the patient revolution
Godlee asks “whether our main challenge will be just keeping up with the speed of change.” [1] She draws attention to Wicks et al`s assertion that “when it comes to clinical trials some patients are already well ahead of the game.”[2] : this is not new.
Twenty two years ago, in 1992, the BMJ drew attention to the influence of the AIDS activists in taking matter into their own hands. [3] In 1994/5 this incident was recounted at a Lancet conference in Bruges, and published in a Government Health Select Committee Report [4] :
“The United Kingdom, like the United States, has seen patient participation and involvement in AIDS trials, thus leading the way. Patients have a rôle to play by advocating to trialists that what they view as havoc being cause by organised well-informed patients (as we saw in The States) was in fact a challenge to the trialists` interpretation of the uncertainty principle which had ignored the patients` preferred outcomes.[3] The resultant compassionate release of a “promising” new AIDS drug, rejecting the discipline of the proper and best method of evaluation, demonstrated more forcibly to the patients than any imposition of a trial, the folly of such demands and hasty judgement of efficacy. Trialists might argue that this prolonged the agony for current and future patients, but those involved patients might argue that it hastened the understanding of both patient and trialist about the need for unhurried, controlled evaluation of interventions within a well-designed trial, designed jointly to take into account both parties` needs, based on a recognition of everyone`s responsibilities in the matter. The benefit of the involvement of a healthy public in debating these issues cannot be over-emphasised.” [5]
I believe we need to remember to learn from history and evolve rather than 'revolve'. [6]
[1] Godlee, F. Towards the patient revolution. BMJ 2014;348:g1209
[2] Wicks P, Vaughan T, Haywood J. Subjects no more: what happens when trial participants realize they hold the power? BMJ 2014;348:g368
[3] Institute of Medical Ethics Working Party. AIDS, ethics and clinical trials. BMJ 1992; 305:699-701
[4] Thornton H. “The patient`s role in research”. (Paper given at The Lancet “Challenge of Breast Cancer” Conference, Brugge, April 1994.) In Health Committee Third Report. Breast Cancer Services. Volume II. Minutes of Evidence and Appendices. London HMSO July 1995. 112-114.
[5] Baum, M. “New approach for recruitment into randomised controlled trials.” The Lancet 1993; 341;812-814
[6] Thornton H. Empowerment is inappropriate for equal citizens. Letter: BMJ 2013;346:f3573 doi: 101136/bmj.f3573 4th June 2013 http://bmj.com/cgi/content/full/bmj.f3573
Competing interests: No competing interests