National Standards for Public Involvement in Research: missing the forest for the trees

Abstract

Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement.

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

“…64 This is analogous to the difference in motivation and expectation of patient groups in comparison with public groups, with the former advocating out of personal experience and for quality of medical services, with the latter advocating out of public good and for equity of medical services. 5,65 CE needs to involve a multitude of relevant forms of engagement, to ensure that this heterogeneity of community is accounted for.…”

“…C ommunity engagement (CE), as a component of Stakeholder Engagement (SE), in biomedical research is increasingly being recognized by researchers and required by some funders as a primary ethical responsibility, with mutually beneficial outcomes for the community and the research team. [1][2][3][4][5] This importance is emphasized globally by projects such as INVOLVE in the United Kingdom and by PCORI (Patient-Centered Outcomes Research Initiative) in the United States. [6][7][8] While generally accepted on principle, the knowledge base for what constitutes effective and ethically sound CE is limited.…”

“…[9][10][11] Furthermore, there is a concern that CE in health research is rarely community directed, often tokenistic in practice, and may not amount to genuine engagement, empowerment, or consideration for the diverse, heterogeneous concerns and priorities of these communities. 1,5,[12][13][14][15][16][17][18] The spectrum of engagement can vary from community acknowledgment at a superficial level to community-based action research (CBAR). The focus of this article is on CE, which is a more flexible approach that is not so prescriptive in its intention and outcome.…”

Consumer involvement in emergency medicine research: Lessons from engaging sepsis survivors

“…The stated aim of these standards is: ‘to provide clear, concise benchmarks for effective public involvement along with indicators against which improvement can be monitored’. The document describes six standards against which public involvement can be measured, but as critics argue it is lacking in substance about how, in practical terms, these standards can be achieved.…”

The importance of ethical expertise

“…The UK National Standards for Public Involvement in Research are discussed in this issue of JME and McCoy et al provide a good illustration of why ethical expertise is important for framing public policy 5. The appeal of stakeholders having some say into research projects, particularly  when they are funded via taxation is easy to understand, so who would not see public involvement as a good thing?…”