New research from colleagues at the at the University of Oxford Ethox Centre and Department of Psychiatry highlights challenges in translating a commitment to equality to the reality of patient and public involvement programmes in research.
Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI).
The paper, published in Research Ethics, explores how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI. It argues that the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial.
Sapfo Lignou, lead author, says:
‘Meaningful PPI requires clear guidance to ensure efforts break barriers effectively. Beyond bias training, a principled approach is vital to navigate competing values in decision-making.’
The paper concludes that a principled way of resolving disputed boundaries between acceptable and unacceptable exclusion of people in PPI is necessary . It identifies that ethical guidance, which recognises the complexities and trade-offs required in this context, is needed to help address challenges and implement involvement strategies that are fit for purpose.
Lignou, S., Sheehan, M., & Singh, I. (2024). ‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research. Research Ethics, 0(0). https://doi.org/10.1177/17470161231224060
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