Ethical review boards are poor advocates for patient perspectives
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Ethical review boards are poor advocates for patient perspectives. / Masterton, Malin; Renberg, Tobias; Hansson, Mats G; Kälvemark Sporrong, Sofia.
In: Research Ethics, Vol. 10, No. 3, 2014, p. 169-181.Research output: Contribution to journal › Journal article › Research › peer-review
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TY - JOUR
T1 - Ethical review boards are poor advocates for patient perspectives
AU - Masterton, Malin
AU - Renberg, Tobias
AU - Hansson, Mats G
AU - Kälvemark Sporrong, Sofia
PY - 2014
Y1 - 2014
N2 - In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards (ERB), as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire was developed and sent to patient members of the Swedish Rheumatism Association (n = 1195) and to all ERB board members in Sweden (N = 583). Response rates were 65 percent and the surveys were conducted in Jan−May 2011. Agreement across the groups included priority for medical research on diagnostic and early detection of disease. A key difference was expert and lay ERB members giving higher priority to basic research/research on lifestyle and prevention (primarily benefiting future patients), whereas patients prioritized research on daily function. On this significant point, lay members did not share the opinion of this patient group, indicating that they may be poor representatives for patients’ views. These results call for further research: how can patient perspectives be included in ERB discussions and in what way should patients’ values influence the research agenda.
AB - In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards (ERB), as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire was developed and sent to patient members of the Swedish Rheumatism Association (n = 1195) and to all ERB board members in Sweden (N = 583). Response rates were 65 percent and the surveys were conducted in Jan−May 2011. Agreement across the groups included priority for medical research on diagnostic and early detection of disease. A key difference was expert and lay ERB members giving higher priority to basic research/research on lifestyle and prevention (primarily benefiting future patients), whereas patients prioritized research on daily function. On this significant point, lay members did not share the opinion of this patient group, indicating that they may be poor representatives for patients’ views. These results call for further research: how can patient perspectives be included in ERB discussions and in what way should patients’ values influence the research agenda.
U2 - 10.1177/1747016113508948
DO - 10.1177/1747016113508948
M3 - Journal article
VL - 10
SP - 169
EP - 181
JO - Research Ethics
JF - Research Ethics
SN - 1747-0161
IS - 3
ER -
ID: 122290024