Updated May 2025
Enhancing Research through Patient and Public Involvement (PPI) Groups
Introduction
Patient and Public Involvement (PPI) groups are foundational to ethical and impactful health research, fostering collaborative partnerships between researchers and stakeholders to ensure studies address genuine community needs (Health Research Authority (HRA), 2023). This reflection evaluates my journey in establishing a PPI group for my doctoral project, informed by supervisory guidance, institutional policies, and insights from Shoba Dawson’s (2020) work on PPI dynamics in doctoral research. I critically assess the rationale for PPI, ethical considerations, and lessons learnt, concluding with strategies to enhance future practice.
Understanding PPI Groups
PPI is defined by the HRA (2023) as research conducted “with” or “by” patients and the public, rather than “to”, “about”, or “for” them. This approach prioritises co-production, where contributors shape research design, logistics, and dissemination, ensuring outcomes are accessible and relevant (INVOLVE, 2012). The NHS promotes PPI to democratise research, reduce power imbalances, and align academic priorities with public values (NHS, 2021). As Dawson (year) notes, PPI in doctoral research enriches methodological rigour by embedding lived experience into theoretical frameworks, though it requires careful negotiation of contributors’ roles and expectations.
The Role of PPI in My Research Project
My supervisors recommended a PPI group to address potential biases in my study’s design and improve participant recruitment strategies. Guided by the HRA’s (2023) best practice guidelines, I collaborated with the University of Southampton’s PPI team to recruit five contributors via local NHS networks and community forums. The HRA emphasises early involvement to “identify research questions that matter” (HRA, 2023), which resonated with my goal of ensuring the project’s feasibility and social relevance. Dawson’s (2020) reflection on mutual learning between researchers and contributors underscored the importance of framing PPI as a partnership, rather than a transactional consultation.
Ethics
Although the HRA (2023) clarifies that PPI activities typically do not require ethical approval, as contributors act as advisors, not participants, my university mandated a review to ensure compliance with GDPR (2018) and mitigate risks of perceived coercion. This policy aligns with Dawson’s (2020) observation that institutional requirements often exceed national standards to safeguard transparency. Developing structured questions for the group necessitated clear communication about the advisory role, reinforcing ethical integrity while respecting contributors’ autonomy.
Establishing a PPI group revealed the transformative potential of embedding lived experience into academic research. The HRA’s (2023) frameworks and Dawson’s (2020) insights on doctoral PPI underscore the necessity of viewing contributors as co-producers rather than advisors. Moving forward, I will prioritise structured co-design, inclusive recruitment, and transparent impact assessment to align my practice with national standards and ethical imperatives. This approach not only enhances methodological rigour but also honours the democratic ethos of PPI as a catalyst for socially meaningful research.
References
Dawson, S, Ruddock, A, Parmar, V, Morris, RL, Cheraghi-Sohi, S, Giles, S & Campbell, SM (2020), 'Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher', Research Involvement and Engagement, vol. 6, 23 (2020). https://doi.org/10.1186/s40900-020-00201-w
GDPR (2018). General Data Protection Regulation. Available at: https://gdpr-info.eu.
Health Research Authority (HRA)(2023). Public Involvement in Research. Available at: https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/.
INVOLVE (2012). Briefing Notes for Researchers: Public Involvement in NHS, Public Health, and Social Care Research. Eastleigh: INVOLVE.
NHS (2021). Patient and Public Involvement in Health and Social Care Research. Available at: https://www.nihr.ac.uk.
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