Theory and Practice of User-Involved Research

Abstract

The application of user involvement in the design and implementation of research has progressed through various frameworks and is an increasingly recognized and expected as a key element of ethical research methodologies. The practice of engaging users (the public, patients, service recipients, etc.) beyond the traditional scope of subject, and elevating their role as partner or co-designer of the research process, is theoretically rooted in civil rights and social justice ideologies. The success of these types of models are influenced by various factors including the people involved, their capacities and values; the physical and funding environment in which the research occurs and the approaches used to engage. In theory, user involved research is most successful when the people, approaches and environment are genuinely interested and centralized around inclusive methods that posit that populations researched have the right to contribute to research done and researchers have the ethical responsibility to engage them using measurable strategies. User involved research frameworks have the potential to create a space that both values and uplifts historically marginalized voices, while touting the demonstrated advantage of improved effectiveness in research outcomes and implications. Yet there exists a dissonance between theory and practice in the field, due to a lack of consistent understanding, practices and standards tied to the approach.

Citation

McGaffigan, E., Foster, D.S., Webber, S. and Destrampe, M. (2023), "Theory and Practice of User-Involved Research", O'Sullivan, R. (Ed.) Ethics and Integrity in Research with Older People and Service Users (Advances in Research Ethics and Integrity, Vol. 9), Emerald Publishing Limited, Leeds, pp. 3-20. https://doi.org/10.1108/S2398-601820230000009001