The NIHR MH-TRC Mission will forge a fresh understanding of mental ill health which is sensitive to a range of priorities - of patients and their families, of clinicians and researchers, and of industry - to create a consensus around the alignment of research and treatment priorities.

Everyone benefits from research. Research provides evidence about what works best. Patients, carers, people who use health and social care services and health and social care professionals all use this evidence to make decisions about treatments and care. This can shape:

• what research gets done
• how it’s carried out
• how the results are shared and applied in practice

We can’t change what we don’t understand. By studying how and why mental health conditions occur, we can speed diagnosis, improve the search for better treatments and even find ways to prevent mental illness.

There is a global consensus that people with lived experience of a mental health condition must play an integral role in influencing policy and processes, specifically in their role as agents of change, leading and co-leading projects alongside a multidisciplinary team. Patient and public involvement is a critical underpinning component.

Being involved is not the same as taking part in research. Involvement is not about taking part in a trial or study to test a new treatment or care option. It’s about being a member of the research team that works together to design and run the study. It ensures that research and outcomes are relevant and important to patients, carers and the public; research materials are easy to understand; and the research process is sensitive and acceptable to potential participants. Substantial work is therefore needed to understand the perspectives of multiple stakeholders and to develop a framework for their collaboration.

We define public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

When we use the term ‘public’, we are including:

• patients and potential patients
• carers and people who use health and social care services
• people from organisations that represent people who use services

The MH-TRC Mission works hard to ensure patients and their families have the opportunity to be heard and to drive change. We know that those who experience or who are at risk of mental illness are well placed to recognise what works well in their care and to identify what changes would make a huge difference to patients both now and in the future.

Your knowledge from having experienced your own care, or the care of others is of great value to researchers. Researchers may have textbook knowledge about different conditions but unless they have also lived through it, there will be gaps in their understanding.

You won’t be expected to have technical knowledge of how research works. The knowledge you have as a patient, carer or member of the public is what’s unique about your contribution.

By getting involved in research, you can help make research more relevant and useful to patients, carers and the public. By working with researchers, you will improve research and make a difference to the way health and social care is provided in the future.

Documented benefits include:

• Stimulating new ideas
• Filling gaps in your knowledge
• Challenging your assumptions and encouraging researchers to reconsider what is important
• Helping researching to identify and avoid problems they would not otherwise have anticipated
• Deepening researchers' understanding of the issues of significance to patients/the public
• Giving researchers confidence and motivation

This paper explores the gains of working collaboratively in PPIEP.

This NIHR page covers briefing notes for researchers who may be new to public involvement in research.

• Regularly gathering input from all stakeholders including patients, healthcare professionals and industry partners to ensure the project remains responsive to their needs and perspectives.
• Learning from others, nationally and internationally.
• Co-producing research with patients, the public and their families, alongside clinicians, researchers and industry, involving everyone early and throughout.
• Ensuring that those underrepresented in research, at most risk of mental ill health, and those from seldom heard and inclusion health groups are involved equitably.
• Recompensing people for their involvement, publishing openly with ‘plain English' versions, and recognising all contributors.
• Coordinating all PPIEP across the MH-TRC Mission Work Streams and demonstrator sites, connecting activities across the MH-TRC Mission and infrastructure.

• Engaging with a diverse range of patient groups, ensuring representation from various cultural, socio-economic, and age demographics.
• Training for staff and researchers on cultural sensitivity and unconscious bias to promote inclusive practices.
• Developing materials and communication strategies that are accessible and respectful of different cultural backgrounds and literacy levels.
• Active engagement with community leaders and advocacy groups to:
  • Understanding the unique needs and preferences of different cultural groups.
  • Facilitating outreach efforts and building trust within diverse communities.
  • Ensuring that the project’s interventions and communications are culturally appropriate and effective.

In mental health research, the voices of patients, caregivers, and communities are essential. People with lived experience of mental ill-health offer a vital perspective that ensures medicines and therapies are not only scientifically sound but also truly meet the needs of those who use them. By involving individuals with lived experience, we create research that is more ethical, relevant, and responsive.

Our Approach to Patient and Public Involvement

We value meaningful participation—not token inclusion. By forming genuine partnerships with people who have firsthand experience of conditions, treatments, and healthcare systems, we enhance the quality and impact of research at every stage.

We integrate lived experience throughout the research process:

• Early-Stage Discovery: Identifying priorities that matter to patients
• Clinical Trial Design: Shaping protocols for real-world feasibility and acceptability
• Recruitment & Retention: Boosting trial participation by addressing barriers and concerns
• Data Interpretation: Co-developing outcome measures that reflect what truly matters to patients
• Regulatory & Access Planning: Supporting patient-centered benefit-risk assessments
• Communication & Dissemination: Making trial outcomes accessible, clear, and meaningful

Why It Matters for the Public

• Ensures safe and secure storage and use of health data to support understanding of its application
• Promotes transparency in university and industry research partnerships
• Maintains trusted environments for holding health data (e.g., NHSE Secure Data Environment)
• Improves public understanding of industry involvement in medical research
• Upholds confidentiality and anonymity in research data and product design
• Clarifies how public funding supports mental health research

Why It Matters for Industry

Incorporating lived experience enables tech and pharmaceutical companies to:

• Develop more patient-centric medicines, interventions, and devices
• Build trust and transparency with the public
• Align more closely with regulatory expectations for patient involvement
• Identify unmet needs that drive innovation and differentiation
• Improve trial efficiency and reduce costly delays

Get Involved as a Member of the Public

We collaborate with medical and tech companies to design and implement lived experience involvement strategies that are ethical, effective, and impactful. We welcome individuals with lived experience of mental ill-health—and their carers—who are interested in shaping the future of medicine by contributing to research design, governance, and dissemination.