Diverse voices, better innovation: Why inclusive Patient and Public Involvement and Engagement matters more than ever

Patient and Public Involvement and Engagement (PPIE) has become an essential part of developing effective health and care innovations. Yet significant challenge persists ensuring that the people involved truly reflect the diverse communities which will be affected by healthcare innovation.

At Health Innovation East, we know that better healthcare starts by listening. Whether we are supporting the development of new technologies, exploring service improvements or helping innovators understand real-world needs, involving patients and the public helps ensure that innovation is grounded in lived experience.

As our commitment to PPIE continues to grow, we are excited to be partnering with PROBr, a platform designed to connect people with research and involvement opportunities, while helping organisations engage with diverse perspective.

Why PPIE is essential to health innovation

Healthcare innovation is most effective when it is designed with people, rather than for them.

Patients, carers, family members and members of the public bring insights that cannot be found in data alone. They understand the day-to-day realities of living with a condition, navigating services, managing treatments, and accessing support. Their experiences can help shape research questions, identify barriers to adopting evidence-backed innovation and highlight issues that professionals might otherwise overlook.

PPIE ensures that projects are not only scientifically robust but also relevant, practical and meaningful to those who ultimately benefit from them.

At Health Innovation East, we see this value every day. Best practice public involvement improves decision-making, strengthens innovation, and helps create solutions that are more likely to succeed in real-world settings. One example is our work delivering the Eastern England Secure Data Environment (SDE). Recognising that public trust and confidence are essential to the responsible use of health data, the team has worked closely with people across the region to understand their hopes, expectations and concerns about how patient data is used for healthcare research.

To ensure a wide range of voices could contribute, a variety of engagement approaches, including in-person workshops, focus groups, digital surveys, regular meetings with a Core Public Advisory Group and ongoing collaboration with patient partners were used. These insights have helped shape the development of the SDE, ensuring that public perspectives are embedded in decision-making and that the programme reflects the needs and priorities of the communities it serves.

The Representation Challenge

While the importance of public involvement is widely recognised, representation remains a challenge across health research and innovation.

Many communities continue to be underrepresented in research and involvement activities (NIHR INCLUDE Project, 2020). This can happen for a variety of reasons, including lack of awareness of opportunities, practical barriers to participation or previous experiences that have reduced trust and engagement. The consequence is that some voices are heard more often than others. When this happens, there is a risk that healthcare innovations are shaped by a limited range of perspectives. Without diverse input, we may miss important insights about how different communities access services, experience illness, respond to interventions or engage with new technologies.

Inclusive involvement is therefore not simply a “nice to have”. It is essential if we want health and care innovations to work for everyone.

Different communities bring different experiences, priorities and perspectives. By involving people from a range of backgrounds, ages, ethnicities, geographical locations and life experiences, we gain a richer understanding of the challenges faced across our healthcare system.

Richer insight helps researchers, innovators and healthcare organisations identify unmet needs, spot unintended consequences and develop solutions that are equitable and accessible.

Most importantly, it helps build public confidence that research and innovation are being shaped by the people they are intended to serve.

Supporting inclusive involvement through PROBr

PROBr’s mission is to improve equitable access to health and clinical research, particularly for communities that have historically been underrepresented in health studies. The platform connects individuals with opportunities to contribute to research and healthcare improvement while supporting organisations to recruit more representative participant groups. Health Innovation East and, PROBr are equally committed to ensuring that a wider range of voices are heard.

Strengthening our PPIE and helping connect with people whose perspectives may not always be represented by traditional engagement activities.

Looking Ahead

Researchers, innovators and healthcare professionals bring expertise, evidence and technical knowledge. Patients and the public bring lived experience, insight and perspective. Both are essential.

As Health Innovation East is committed to involving people from all communities in shaping the future of health and care. Our collaboration with PROBr will help us reach more people, broaden participation, and ensure that the innovations we support are informed by a diverse range of experiences and voices. Because when more people are represented, better decisions are made, better solutions are developed, and ultimately, better health outcomes can be achieved.

Get Involved

Implementing health innovation with impact requires meaningful involvement. Whether you’re a member of the public keen to share your experiences or an innovator looking to embed patient and public perspectives into your work, there are opportunities to get involved.

Together, by increasing participation and broadening representation, we can create health and care innovations that are more inclusive, effective and equitable for everyone.