Professor Melanie Calvert FMedSci (Professor of Outcomes Methodology at the University of Birmingham, an NIHR Senior Investigator and Director of the Centre for Patient Reported Outcomes Research) and Professor Anne May (Professor of Clinical Epidemiology of Cancer Survivorship at University Medical Center Utrecht and a group leader in Lifestyle and Survivorship Care at the Netherlands Cancer Institute) set out priorities for giving people with lived experience a genuine role in shaping health research, policy and regulation.

Meaningful public involvement requires more than asking for feedback. So how can health research, policy and innovation systems ensure that public involvement moves beyond consultation and becomes a key part of strategic decision-making? This question was at the heart of a workshop jointly convened by the Academy of Medical Sciences and the Royal Netherlands Academy of Arts and Sciences (KNAW) in March 2026. 

Despite differences in systems and structures, we recognised a shared ambition: to ensure that people with lived experience are not just consulted, but are empowered to help shape research priorities. They should be involved to influence decisions and contribute to strategic discussions that affect health research and healthcare. 

Patient involvement may now be widely recognised as important, but it is far from universal. An analysis of 3,000 health research papers (Price, A., et al., 2018) found only one in five reported involving patients or the public, although this rose to 45% among UK studies.

And we know that public trust in science requires trustworthiness. Trust is not built simply by telling people that scientists are experts. RAND Europe’s research on public trust in science for Wellcome found that people also judge science by whether researchers are open, independent and willing to listen. Patient and public involvement (PPI) provides a practical way to demonstrate those qualities, by giving people a meaningful role in shaping research rather than simply communicating its results to them. 

Now one thing I’ve learned is that collaboration is at the heart of success.

Roger Wilson, patient participant who was part of the workshop 

We know meaningful involvement changes research and can make it more inclusive. In one long COVID study discussed at the workshop, patient partners spotted that the original eligibility criteria excluded people who had attended A&E but had not been admitted. Researchers changed the protocol as a result, widening the study population. 

Meaningful involvement requires more than opportunities to provide feedback. It is important to create structures that enable people with lived experience to exercise genuine influence, including within funding, governance and decision-making processes. Strengthening public involvement not only improves decisions, but has the potential to build trust, legitimacy and accountability across health systems.

As a group, we explored several recurring themes.

Funding systems

We know funding systems play an important role in inclusive and meaningful public involvement. Participants were keen to highlight the importance of supporting involvement from the earliest stages of research and policy development and ensuring that lived experience is recognised as a valuable form of expertise within decision-making processes. People with lived experience could have a stronger role in shaping research priorities and contributing to funding decisions. 

Embedding lived experience

People with lived experience should have a meaningful role in shaping health policy, research, ethics and regulation. Discussions explored opportunities to strengthen public involvement in policy review processes, funding assessments, ethics committees and other strategic decision-making forums, helping to ensure that decisions are informed by the perspectives of those most directly affected.

Regulation

A particularly strong theme was the role of public involvement in regulatory decision-making. Participants discussed opportunities to embed lived experience more consistently within medicines development, regulatory review and appraisal processes, and highlighted the need for structured approaches that enable researchers, industry and regulators to demonstrate how patient and public perspectives have informed decisions. Such approaches could help ensure that regulatory decisions are informed not only by scientific and clinical evidence, but also by the outcomes, experiences and priorities that matter most to patients and the public. 

Capability and confidence

Building capability and confidence for involvement is vital to its success. There is a real opportunity to support researchers, policy professionals and public contributors through training, shared learning and the development of practical resources that promote inclusive and effective involvement.  

We can't expect patients, their caregivers or public to just walk into a room and immediately participate in a scientific discussion. Whether that's for a research project, on regulation, or policy, they need the support to be able to actively engage. Rather than expecting under-represented communities to enter unfamiliar institutional spaces, organisations should be prepared to work with and learn from  people who already have community trust and cultural knowledge. 

Stronger communities of practice

There was a feeling that stronger national and international communities of practice would mean better connections for researchers, funders, patient organisations, health organisations and public contributors to share knowledge, exchange experiences and collaborate on common challenges. There was also support for creating accessible knowledge hubs, case studies and other resources that can help organisations develop and sustain high-quality involvement activities.

Accountability and feedback

Accountability emerged as a further area for action. Feedback mechanisms and scrutiny processes make it clear how public input has informed decisions and priorities. They can contribute to strengthening transparency, demonstrating impact and supporting meaningful partnerships between organisations and the communities they serve. 

There is evidence that changing expectations can make a difference. After The BMJ introduced requirements around reporting patient and public involvement, the proportion of research papers reporting PPI increased from less than 1% to 11%.

But meaningful public involvement depends not only on individual projects, but on creating cultures, systems and structures that value lived experience, foster collaboration and enable public perspectives to inform decisions at every level. Achieving this will require sustained commitment, partnership and a willingness to learn from diverse perspectives. 

If the conditions are right, I believe the partnership is transformative.

Christina Guerrero Paez as CEO of a Dutch breast cancer patient organisation who was part of the workshop 

We were grateful for the contributions of all participants, particularly those who shared their lived experience and helped shape the discussions and priorities for future action. Their insights, alongside those of researchers, policy-makers and engagement professionals, created a rich and constructive dialogue and provided a strong foundation for future collaboration between the UK and the Netherlands.

Readers might like to explore reflections from workshop participant Flic who wrote about the experience on LinkedIn. We also created a short video, summarising the discussion.  

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