Uncovering the values that motivate people in relation to payments for involvement in research

Abstract

Purpose – The purpose of this paper is to contribute to response to the 2013 health and welfare reform in the UK by looking specifically at how health research stakeholders in the East Midlands perceive reimbursements for their participation in research. Design/methodology/approach – In keeping with the government research agenda, a survey was distributed to patient and public involvement in research volunteers and other stakeholders in the East Midlands region. In total, 251 useful returns were statistically analysed using descriptive and frequency based statistics and factor analysis. Principal Component Analysis and Varimax Rotation with Kaiser Normalisation were used. This was supplemented by thematic analysis of the content of open questions. Findings – 29 per cent of respondents reported experience with payments and/or reimbursement of expenses for participation in research. Three main factors emerged from the exploratory factor analysis indicative of the values that underpin participants motivation to participate in research. These were “as an opportunity for self-development”, “volunteering”, and “work and market forces”. This revealed that local organisations were somewhat out of step with stakeholders motivations. Research limitations/implications – It is a small study, and therefore has limited power to predict. Wider societal factors were not taken into account and may also impinge on the responses given, especially if respondents are dependent on welfare benefits and vulnerable to shifting community attitudes. Practical implications – This study has got practical implications for policy makers, ethics committees, agencies promoting patient and public involvement, and research organisations. It should influence the design of health research, allow systems to be aligned with individual motivation, maximise recruitment to research and enhance the validity of research findings. Social implications – Genuine coproduction will enhance the quality of health and social care research, and will be strengthened by payment systems that respond the ethical position of participants rather than simply organise around welfare benefit regulations. This study also has the potential to influence guidance from major funders of health research. Originality/value – This study offers an unique contribution into a neglected, complex yet significant area of research practice.

A mixed-methods study exploring the characteristics and needs of long-stay patients in high and medium secure settings in England: implications for service organisation

“…Our assumption that this would motivate group members in straitened financial circumstances turned out to be unfounded, confirming experience elsewhere that many people are motivated to become involved in health research by altruism rather than by profit. 162,163 Additional negotiations were needed for people living in secure settings, to ensure that payments could be offered and accepted within those environments where patients do not always have access to money.…”

Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework

“…Also, other initiatives, such as online forums, could be more conducive to recreating the informal spaces of face-to-face meetings and overcome this vision of business-like sessions. This may further uncover ambiguities surrounding the purpose of PPI and the role of reciprocity in establishing relationships, where it is accepted that public contributors engage in health research with numerous and varying motivations [ 24 ]. As the literature on volunteering explores this phenomenon [ 25 ] it should be both recognised and reflected in efforts to reframe digital e-PPI that can mitigate the perception of a reduction to a transactional exchange, that has been highlighted.…”