Avoiding Tokenism: Strategies for Meaningful Involvement in Patient and Public Involvement (PPI) Research

In the realm of Patient and Public Involvement (PPI) in research, moving beyond tokenism to achieve genuine inclusivity is a pressing challenge. Tokenistic practices, where patient and public involvement is superficial and performative, can undermine the goals of PPI and lead to disempowerment. To ensure that PPI is meaningful and impactful, researchers can adopt several strategies that foster authentic engagement.

1.       Early and Continuous Engagement

Involve patients and public members from the earliest stages of the research process and maintain their involvement throughout. This approach ensures their perspectives are integrated into the research design, implementation, and dissemination phases. Early engagement helps identify relevant research questions and ensures that the study remains aligned with the needs and priorities of those it aims to serve.

2.       Capacity Building

Provide training and resources to patients and public members to enable them to participate fully. This support can include education about the research process, mentoring, and access to necessary information. Empowering participants with knowledge and skills enhances their contribution and builds their confidence and sense of agency.

3.       Collaborative Approaches

Adopt collaborative approaches, such as a co-production model in which patients and public members are partners in the research, sharing decision-making responsibilities. This model promotes equal power dynamics and ensures all voices are heard and valued. Co-production fosters a collaborative environment where the insights and experiences of all participants are integrated into the research process.

4.       Transparent Communication

Maintain open and honest communication about how patient and public input is used. Provide feedback on how their contributions have influenced the research and acknowledge their role in publications and presentations. Transparency helps build trust and demonstrates the value of their involvement, reinforcing their commitment to the process.

5.       Reflective Practice

Regularly evaluate the involvement process and be willing to make changes based on feedback. Reflective practice helps identify areas where tokenism might occur and allows continuous improvement. By reflecting on what works well and what doesn't, regularly evaluating their PPI activities and seeking feedback from participants, researchers can adapt their strategies to enhance the effectiveness of PPI.

Moving beyond tokenism in PPI requires a commitment to genuine engagement and a willingness to invest in the necessary resources and structures. By adopting these strategies, researchers can foster an inclusive environment where patient and public involvement is meaningful and impactful. This shift enhances the quality and relevance of research and moves towards a future where PPI is truly integral to research, benefiting both researchers and the communities they serve.

Further reading on this topic:

Staley, K. (2015). ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research involvement and engagement, 1, 1-10.

Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A. (2019). Frameworks for supporting patient and public involvement in research: systematic review and co‐design pilot. Health expectations, 22(4), 785-801.

NIHR (2012). Briefing notes for researchers: Public involvement in NHS, public health, and social care research. Available from: NIHR

Brett, J. O., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient-Patient-Centered Outcomes Research, 7, 387-395.