Abstract: A panel of 16 early-career researchers were asked to take part in a three stage survey to ask them about the ethical issues raised by involvement, and how ready they felt to address these issues. The study was carried out in the Québec SPOR-SUPPORT Unit in Canada.
The findings showed that involvement raises important ethical issues: 1) professionalization of patients involved in research (with risks of patients becoming less representative); 2) adequate payment of patients; 3) fair recognition of patients’ experiential knowledge; and 4) tokenism (engaging patients only for symbolic appeal). While the researchers felt moderately prepared to deal with these ethical issues, they reported being uncomfortable knowing how to apply for ethical approval for involvement.
The authors conclude it is vital to establish clear ethical standards and to train and support the involvement community to identify and resolve these ethical issues.
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Categories: journal article researchers research commissioners ethical issues training and supporting researchers
Date Entered: 2019/04/27
Date Edited: 2019/04/27