The NHS 10-Year Plan, published in January 2025, commits the UK to becoming a world leader in clinical research. Its patient involvement measures are specific: NHS App integration to streamline volunteer recruitment, standardised research contracting to reduce administrative burden on research teams, and an ambition to embed patients in the design of studies from the outset — not just as participants, but as co-designers.

These commitments will encounter a bottleneck they do not name.

Clinical researchers who will be expected to deliver genuine co-design are already managing active trials, grant renewals, clinical sessions, and trust-wide transformation programmes. The problem is not motivation. It is that there is no cognitive capacity left to do it well — and adding a requirement does not create capacity.

The plan is right about the destination

The commitment to make the UK a world leader in clinical trials and patient involvement in research is welcome. The specific measures are real improvements: faster trial setup, NHS App integration for volunteer recruitment, standardised contracting to cut administrative duplication. These reduce friction at the entry point — they make it easier for patients to join research that has already been designed.

But they do not address the harder question: whether patients shape what gets researched in the first place. Co-design — where patients influence the research question itself, not just the consent form — is where the evidence says involvement makes the greatest difference to relevance and uptake. And it is also the most cognitively demanding form of involvement to deliver.

Why mandates alone will not work

There is a pattern that anyone who has worked in NHS governance will recognise. When a new requirement lands on an already overloaded professional workflow, the response is rarely non-compliance. It is efficient compliance: the form gets completed, the committee is convened, the documentation is filed. The substantive activity the requirement was designed to produce does not happen — not because the professional is indifferent, but because there is no capacity left to do it well.

This is not a failure of values. It is the environment producing exactly the behaviour it was structured to produce. A 2023 BMC Public Health study consulting NHS health services researchers documented ‘overwhelming and increasing bureaucracy, delays, costs and demoralisation’ as the baseline condition — before any new co-design requirement is added to the stack.

Mandatory patient involvement standards will generate mandatory patient involvement documentation. They will not, by themselves, generate the relational work that genuine co-design requires — the ongoing conversations, the iteration, the time taken to explain what a research question actually means and to understand what patients say back.

What the continental evidence actually shows

A recent 2026 European Parliament preliminary study on patient involvement in clinical research across EU member states maps implementation and finds substantial variation — documenting dedicated institutional infrastructure (patient advisory bodies, coordinator roles, sustained funding) as a feature of the systems where practice is more deeply embedded. The study observes that without explicit funding provisions, participatory practices would likely have remained limited.

Belgium’s university hospital patient advisory boards and Germany’s national cancer research patient council follow this model. Neither added patient involvement to existing researcher workflows. Both created standing institutional structures — coordinators, trained patient representatives, continuity between projects — that carry the load on behalf of researchers. The researcher accesses genuine patient expertise without bearing the full cost of maintaining it.

The NHS is not Belgium or Germany, and the specific structures cannot be transplanted directly — research here is embedded in clinical delivery in ways uncommon on the continent, and coordinator infrastructure competes with immediate workforce pressure. But the mechanism identified in the European evidence transfers regardless of structural context: wherever the cost of genuine involvement falls on already-overloaded individuals, documentation substitutes for substance. The unit cognitive cost per researcher must fall, not rise. Add infrastructure, not obligations.

What a Trust or NIHR programme office could do next week

Two actions — neither requiring national policy change — would begin shifting the environment rather than adding to the load.

First: convert project-by-project patient recruitment into a standing programme-level panel. Instead of each researcher spending time identifying, briefing, and maintaining relationships with patient representatives from scratch for every study, a programme-level panel means that investment is made once and shared across multiple projects. The researcher accesses patient expertise without rebuilding the relationship each time. Some NIHR Biomedical Research Centres and Academic Health Science Networks already operate programme-level patient panels; where they exist, the task is extending their remit upstream — to the stage where research questions are framed, not just where protocols are reviewed. Where they do not, the infrastructure can be built with existing R&D staff and modest coordination resource.

Second: move patient involvement to the point where research questions are set, not the point where protocols are written. This means including patient representatives in the conversations where study concepts are discussed — the research strategy meetings, the grant development workshops — rather than convening them after the scientific framework is fixed. The marginal additional time at that stage is small. The effect on co-design quality is large, because it is the only stage at which patients can influence what is being asked rather than how it will be asked.

Neither of these requires waiting for the 10-Year Plan’s implementation timetable. They require a decision by a clinical research director or NIHR programme lead that the infrastructure investment will be made before the next mandate lands, rather than after.

Britain is building its research participation architecture now. The pattern of checkbox PPI — where involvement is documented but not genuinely integrated — is not yet hardened into institutional habit. That is the moment to get the environment right.

Author

Vsevolod Shabad

Vsevolod Shabad is a Fellow of the BCS and a researcher affiliated with the University of Liverpool. He specialises in governance failure and decision-making in complex organisations, with experience across critical infrastructure, healthcare systems, and regulated sectors. The views expressed are those of the author in a personal capacity. Advisory enquiries via www.vshabad.com.

Declarations of Interest

None

Declaration of AI Use

During the preparation of this work, the author used Claude (Anthropic) to improve readability and language quality as a non-native English speaker. After using this tool, the author reviewed and edited the content as needed and takes full responsibility for the publication’s content.