Public involvement across the UK’s research ecosystem at systems-level – results from the INTEGRATE study, a freedom of information-based survey
A UK-based Freedom of Information study reveals that while patient and public involvement is common at the study level, it remains significantly underrepresented in executive-level strategic decision-making across universities, funders, and NHS organizations, with the notable exception of NHS bodies where such involvement is more prevalent.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Decisions about which medical research gets funded are never neutral. They are human choices that determine which diseases are studied, which treatments are developed, and ultimately, which communities receive the most attention and resources. For decades, major funders in the United Kingdom and beyond have insisted that researchers must involve patients and the public in the design of individual studies. This practice, known as patient and public involvement, ensures that the questions scientists ask actually matter to the people who will live with the results. However, a critical gap remains in how this principle is applied. While the public is often invited to help shape a single research project, they are rarely invited to the table where the big, strategic decisions are made. These are the meetings where universities, hospitals, and funding agencies decide their overall research priorities, the direction of their entire institutions, and how billions of pounds of public money are allocated. The question is whether the people whose lives are affected by these choices have a seat at the highest level of decision-making, or if they are only consulted after the strategy has already been set.
A team of researchers set out to map the landscape of these high-level decisions across the United Kingdom. They wanted to know if the public had a voice in the executive boards of universities, National Health Service organizations, and research funders. To find the answer, they used a powerful legal tool called a Freedom of Information request. This is a mechanism that allows anyone to ask public institutions for recorded information that is not already published. The team sent these requests to 462 different organizations, including 123 research-active universities concerned with health research, 245 NHS trusts responsible for hospital care, and the various bodies that fund medical research. They asked a simple but profound question: Does your highest governing board, the one that sets the strategy for health research, include a representative from the public? If not, do you have a separate advisory group that feeds public views directly into those top-level decisions?
The response rate was remarkably high, with nearly 92 percent of the institutions replying. Of the 402 organizations that provided useful information, the results revealed a stark reality. Only about one in five of these institutions had a public representative sitting directly on their executive board. A slightly larger group, about one in four, had a separate advisory structure where public members could offer input. This means that in the vast majority of cases, the people who set the strategic direction for health research in the UK are making those decisions without a formal public voice in the room. The study found that the situation was not uniform across the country. Organizations that deliver healthcare, such as NHS trusts and integrated care boards, were more likely to have public involvement at the executive level than universities or independent funding bodies. In fact, universities were the least likely to have public representatives on their top boards. When universities did involve the public, it was almost always at the level of individual research projects, such as a specific study on diabetes or heart disease, rather than at the level of the university's overall research strategy.
The researchers also looked at how these organizations tried to include the public when they did so. The methods varied widely. Some institutions placed a public member directly on the board, while others relied on a staff member to convey the views of a public group. In some cases, public members were paid for their time, following national guidelines, while in others, they volunteered without compensation. The study highlighted that when public contributors were not paid, it created a barrier for people from lower-income backgrounds, meaning the voices heard were often limited to those who could afford to give their time for free. Furthermore, training for these public representatives was often optional and inconsistent. Some institutions had clear rules and support systems, while others offered little more than a vague invitation to participate. The data suggested that many universities viewed the setting of research strategy as an academic exercise that did not require public input, reserving public involvement only for the practical details of running a specific study.
This disconnect between the stated value of public involvement and the reality of strategic decision-making suggests that the system is not yet fully open to the people it serves. The study indicates that while the UK has a well-established model for involving the public in individual research projects, this model has not been successfully transferred to the highest levels of institutional power. The findings suggest that the most significant decisions about what research gets done are still being made behind closed doors, without the direct input of the communities those decisions will affect. The authors note that this lack of representation is particularly concerning given the growing political and social push to democratize health and empower communities. Without public voices at the strategic table, there is a risk that research priorities will continue to drift away from the needs of the public, potentially widening existing health inequalities. The study concludes that while some organizations have found ways to integrate public perspectives into their governance, the overall ecosystem remains fragmented, and the path to meaningful, system-wide public involvement is still largely uncharted.
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