Reimbursing research participants in UK health research: ethical and policy implications

Roca, Teresa and Bates, Peter (2015) Reimbursing research participants in UK health research: ethical and policy implications. In: BAM 2015, 8 - 10 September 2015, Portsmouth.

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Abstract

This paper explores the ethics of reimbursing research participants, looking at how health research stakeholders in the East Midlands perceive reimbursements for participation in research. This is particularly relevant in the context of Governments targets to increase participation in health research and the UK welfare reform - the universal credit scheme triggering reform of payment systems for involvement in research. Internationally health research has relied on volunteers, influenced by the 1947 Nuremberg code of ethics. In keeping with the UK collaborative research agenda, a survey was distributed to Patient and Public Involvement in research (PPI) volunteers active in NHS Trusts to complete and disseminate to relevant health stakeholders. 251 responses were statistically analysed using descriptive, frequency based statistics and factor analysis (FA). Principal Component Analysis and Varimax Rotation with Kaiser Normalization used, supplemented by thematic analysis of open questions. Four factors emerged from the exploratory FA, indicative of the values underpinning participants’ motivation to participate in research a) ‘as an opportunity for self-development’; b) ‘volunteering’; c) ‘work and market forces’; and d) ‘extra resources’. Results brought to light that stakeholders’ values do not entirely accord with the priority given to volunteering in most NHS organisations i.e. respondents valued participation most as opportunities for self-development, skill acquisition and to be reimbursed as work. Findings suggest a social shift in the meaning of the ethical values and principles underpinning research (i.e. from volunteering as moral obligation to market values) indicative of the present socio-economic climate. This study contributes to a greater understanding of the use of reimbursements in health research with practical implications for policy makers, ethics reviews, ethics committees and researchers in the design of health research that both promotes ethical integrity and also maximises recruitment, critical for validity purposes.

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