Patient and public involvement and engagement (PPIE) is an important part of designing research, healthcare services and innovation that reflect the needs and experiences of the people they are intended to benefit.
Cambridge University Health Partners brings together two universities and three NHS Foundation Trusts in research collaboration: Anglia Ruskin University, the University of Cambridge, Royal Papworth Hospital NHS FT, Cambridge and Peterborough NHS FT and Cambridge University Hospitals NHS FT.
Together, we share an ambition to build a culture where patient and public involvement and engagement is visible, valued and embedded across our organisations – helping to drive equity, excellence and trust in research and innovation.
Our shared principles:
- With, not for: Involvement is done with people, not to them or for them. We value lived experience as a form of expertise.
- Inclusive by design: Involvement opportunities should be accessible and inclusive, and actively reach people who are underserved or underrepresented.
- A core value: PPIE should be part of how we work. It should be considered throughout the lifecycle of research, services and systems.
- Supported: People involved in PPIE receive the support, training, recognition and feedback they need to take part meaningfully.
- Collaborative and transparent: We share learning, evaluate impact and build trust by being open about how public input influences decisions and outcomes.
The project
We carried out structured conversations with 20 PPIE professionals and lay contributors across our five member organisations and ancillary bodies, alongside a simple questionnaire for people who were unable to attend an interview, with six questionnaires completed.
The work was commissioned to look across our partners at how PPIE is being carried out in research and innovation, where we are doing it well and where there are gaps, with a focus on case studies illustrating the work already taking place across the partnership.
The work was structured around the National Institute for Health and Care Research (NIHR) UK Standards for Public Involvement in Research.
Read the PPIE Mapping project short report
Read the PPIE Mapping project long report
Key findings
- Members have shared values, but varied definitions: While each organisation approaches PPIE differently – reflecting their distinct missions and contexts – there are strong common values of inclusion, partnership, and working ‘with’ people rather than ‘for’ them. The NIHR definition of PPIE is the most widely adopted, but there is a variety of definition and strategy, with an awareness that engagement, participation, and involvement often overlap in practice.
- There is pride in a growing culture of involvement as ‘business as usual’: PPIE is increasingly seen as a core part of good research and innovation, rather than a tick-box or funding requirement. There is a strong sense of pride in a shifting cultural paradigm that values lived experience and inclusive approaches to research design and delivery.
- Strength and innovation are evident in creative, inclusive practice: Organisations are using flexible, often community-rooted approaches to reach underrepresented groups and embed equity in research. There are tangible impacts across the research and innovation life-cycle – from changes to research design to coproducing new hospital builds – and demonstrate the value of trusting, long-term relationships with both individuals and communities.
- Challenges and barriers to good PPIE still remain: Timescales, resources, and system complexity are often barriers to meaningful, sustainable PPIE. Diversity remains a challenge, especially where fast-paced research cycles clash with the time required to build trust in groups and communities. Unclear governance, inconsistent processes, and evaluation challenges were also identified as hurdles. Alongside that, the work is difficult and relentless, and the professionals supporting involvement work need support that recognises the burden of the work.
- There is promise and potential in building on existing collaborative work: Collaboration is already happening through peer networks, campaigns, and shared resources, but there is appetite for more cross-partner coordination. Respondents expressed a need for shared processes, centralised resources, building on joint training, and clearer governance.
Case studies
Patients and the public as Research Ambassadors
Royal Papworth Hospital NHS Foundation Trust has recruited and trained a group of Patient Research Ambassadors who bring the patient and public perspective to research, reviewing study documents, contributing to study meetings, and speaking at events to champion patient and public involvement.
Designing with children, not just for them
Cambridge University Hospitals and Cambridgeshire and Peterborough NHS Foundation Trusts worked with local schools and families to involve children directly in designing the new Cambridge Children’s Hospital.
Art packs were distributed to schools and homes, inviting children to express how they wanted the hospital to feel. These creative contributions were combined with feedback from workshops and used by the project team to shape the hospital’s look, atmosphere and integrated care approach. This case shows how creative, early-stage involvement can bring young voices into healthcare design in ways that are both joyful and influential.
‘Faith-placed’ bowel screening awareness
The Applied Research Collaboration (ARC), hosted by Cambridge and Peterborough NHS Foundation Trust, partnered with the British Islamic Medical Association to improve bowel cancer screening uptake among Muslim communities in Luton and Peterborough. Educational sessions were delivered in mosques, led by same-sex Muslim clinicians and co-produced with the local community to overcome cultural stigma, mistrust and low awareness, supporting earlier cancer detection.
Engaging through poetry – ‘You, Me and Us’
Cambridge University’s Stem Cell Institute created the ‘You, Me and Us’ poetry project, led by Dr Kirsty Ferguson, bringing together patients, families, carers and healthcare professionals to explore life with neuroblastoma through poetry. Co-produced workshops and a collected book of patient-chosen poems helped participants feel heard and gave researchers fresh insight into the emotional realities of the disease.
Next steps
- Building a shared understanding of PPIE across CUHP, including a co-created ambition grounded in lived experience, inclusion and the NIHR definition, alongside a shared glossary of terms to support clarity and consistency. Embedding these shared values and definitions into induction and training for staff, researchers and public contributors, and using them as a foundation for strategic planning and collaboration across organisational boundaries.
- The PPIE Network aims to discuss their individual key strengths and priorities identify areas of overlap, potential collaboration, and shared goals, facilitating regular system updates on evolving health and resource priorities to align PPIE approaches to wider system changes, and support partners to understand common gaps through up-to-date local data.
- Building on existing tools and resources, such as the Engagement Insight Library, to improve the sharing and showcasing of work and frameworks across members and reduce duplication. Using the PPIE Network as a peer learning space to reflect on common challenges, including over-reliance on the same contributors, capacity barriers, working at pace and emerging challenges within PPIE.
- Strengthening collaboration across the PPIE Network through a shared framework – including, clarifying shared goals, principles for working together, and opportunities for joint action across members. Creating centralised skills banks and centralised contact directory, building on the successfulness of shared communication initiatives such as “Love Research” , helping sharing work more visibly. Stretching to include skill building workshops and co delivered sessions on inclusive involvement.
If you’d like to find out more about PPIE, please get in touch by emailing the Comms@cuhp.org.uk or Mariama Malang, CUHP, Strategy Project Support Manager, mariama.malang@cuhp.org.uk.
Get involved in PPIE
Cambridge University Hospitals
NIHR Biomedical Research Centre (BRC): Cambridge
Anglia Ruskin University’s Panel of Public Collaborators – in the early stages of research design
Health Innovation East and impact stories