Four ways to create more inclusive patient and public involvement in research

Patient and public involvement (PPI) is no longer a peripheral consideration in health and social care research. Grant-funding bodies routinely mandate the involvement of patients and the public, helping to improve the relevance and quality of the research and build trust in its outcomes and outputs.

However, PPI in research too often involves inviting the same handful of articulate, well-educated, middle-class people to review grant proposals or sit on advisory panels. For true inclusivity in patient and public involvement, we need to move beyond comfortable networks to involve diverse, historically marginalised and underserved populations. Doing so is not merely a moral imperative; it is fundamental to the rigour, applicability and validity of academic research.

• Evaluating the impact of patient and public involvement in health research
• ‘Doing human’: ways for researchers to make patients feel comfortable to express themselves
• Rethinking the process of patient and public involvement

When academic teams seek public contributors, they often rely on established university patient groups or advertise in familiar places. That isn’t wrong, and those people are valuable to the research process, but this approach often creates a self-selecting cohort. By over-relying on them, we risk excluding socio-economically disadvantaged communities, ethnic minorities, neurodivergent individuals, non-native language speakers and those living with multiple chronic health conditions who do not have the time, familiarity with the research process or resources to sit through long research committee meetings.

When PPI lacks diversity, research suffers from blind spots. Interventions that are not designed around the needs and lifestyles of a diverse group of people often fail when implemented in real-world, heterogeneous populations.

How inclusive PPI improves research quality, relevance and reach

Inclusive PPI directly improves research questions, design, data collection and outcomes. When public contributors reflect the full spectrum of society, research benefits from vital lived experience, improving its quality, relevance and reach.

• Asking the right questions: Community members often challenge basic research assumptions. A study into diabetes management, for instance, might focus on complex digital tracking tools, whereas inclusive PPI with low-income communities might highlight that food insecurity or shift work are the primary barriers to treatment adherence.
• Culturally sensitive methodology: Engaging with a diverse group of public contributors can help to refine consent forms, make sure language is culturally sensitive and develop recruitment strategies that build trust with communities that are rarely involved in research.
• Selecting meaningful outcomes: Researchers frequently prioritise clinical markers, such as blood values or imaging data, whereas patients might care far more about functional outcomes such as mobility, sleep quality or mental well-being. Inclusive involvement ensures that studies measure outcomes that genuinely matter to patients’ everyday lives.

Four ways to achieve meaningful inclusion

To achieve meaningful, inclusive PPI, academic institutions and principal investigators need to fundamentally alter how they approach public engagement.

1. Address structural and financial barriers

We must make involvement accessible. Paying public contributors promptly and fairly for their time and expertise is non-negotiable. Although there are notable exceptions, payment systems are too often slow and cumbersome.

Streamline administrative processes to avoid delayed honorariums, which disproportionately affect low-income contributors. On top of this, offer hybrid meeting options, cover childcare or travel costs and provide digital accessibility support.

2. Meet communities on their own turf

Expecting diverse groups to navigate university campuses or hospital settings, and to parse academic jargon, creates an immediate hierarchy. Researchers must venture outside their institutions and go to the places where local community groups already meet, building long-term, reciprocal partnerships with them as well as with charities, faith organisations and advocacy networks. You build trust through sustained presence, not one-off invitations sent weeks before a grant deadline.

3. Rethink communication and power dynamics

Academic jargon serves to exclude many people from the research process. Inclusive research teams use plain language and avoid institutional acronyms – making language accessible does not mean dumbing down. Addressing power dynamics within meetings is also important. Establish clear ground rules that value public experiential knowledge on equal footing with scientific expertise to encourage quiet or under-represented voices to contribute meaningfully.

4. Training and capacity building for public and professionals

Inclusion is a two-way street. Usually the focus is on public members, giving them some training or orientation sessions to understand research processes and enabling them to contribute to discussions. Equally, however, academic staff require training in inclusive facilitation, anti-racism and trauma-informed practices to ensure that community members feel safe and respected throughout the project life cycle.

A call to action for academic institutions

Higher education institutions have a central role to play in embedding inclusive PPI across their research ecosystems. Much good work already takes place, such as that of the Public Engagement with Research Unit at my university, which works to build relationships between the university and the communities it serves.

Inclusive PPI should be recognised as a core component of research integrity and institutional social responsibility. This means providing dedicated infrastructure, such as community engagement officers, pre-grant PPI funding and flexible payment systems. It also involves rewarding researchers who invest time in building deep, diverse community relationships through academic promotion pathways.

Without inclusive PPI, we risk undertaking research that is not relevant to and does not reach those people who need solutions most. By committing to genuine, inclusive patient and public involvement, we can make sure health research is not only academically rigorous but equitable, impactful and truly representative of the society it serves.

Gary Hickey is senior research manager for the National Institute for Heath and Care Research at the University of Southampton.

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