Embedding patient and public involvement in diabetes data research in Ireland

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Reference: November 2025 | Issue 11 | Vol 11 | Page 22

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In Ireland, new research efforts are leveraging population-level data to better understand disease trends, inform healthcare planning, and drive evidence-based policy and service delivery.^1,2 This work aims to optimise resource allocation, enhance preventive care, and support more equitable and efficient health outcomes across the population.

However, to fully realise the benefits of such data-driven initiatives, it is  essential to partner with patients and the public to ensure transparency, trust, and relevance to lived experience. This article outlines why embedding patient and public involvement (PPI) in population health research is important, and how Converge, the Centre for Chronic Disease and Population Health Research, funded by Research Ireland and based within the Royal College of Surgeons in Ireland’s School of Population Health, is addressing this gap through the establishment of a dedicated PPI panel for diabetes data research.

Why PPI matters in population data research

PPI is defined as “research carried out with or by members of the public, rather than to, about, or for them”.³ Other terms often used include engagement, participation, consultation, and co-production, with each reflecting varying degrees of involvement and partnership between researchers and the public.^3,4

While these terms are often used interchangeably, PPI specifically denotes an active, ongoing relationship that moves beyond consultation toward shared decision-making and mutual learning. In the research context, it involves including people with experience of living with the condition(s) or disease(s) under investigation across all stages of the research cycle, from identifying research priorities and shaping study design, to interpreting results and disseminating findings.

PPI has proven important in enhancing quality and relevance of research conducted, and supporting dissemination of research findings to audiences outside of academia.^5,6 PPI has also been shown to be beneficial in ensuring study methods are more relevant to local context and circumstances, increasing trustworthiness and quality of data, and achieving higher rates of recruitment.⁷ However, its integration into big data research where data analysis and interpretation often occur at a distance from patients themselves, remains limited.

Further connecting population-level data research, where studies often rely on the secondary analysis of existing datasets, is relatively new.^4,8 This is despite the fact that such data sources, including longitudinal cohort studies, electronic health records, insurance claims systems, administrative datasets, and disease registries, ultimately originate from individuals whose experiences and outcomes they represent.⁸

Ensuring the intentional inclusion of patients and the public in shaping and interpreting this research is therefore essential. Without such involvement, there is a risk of disconnect between research priorities and what actually matters to those affected by conditions such as diabetes, including issues related to access to care, quality of life, and barriers to effective self-management. Moreover, insufficient public engagement can undermine trust in data-driven research, particularly in an era where data linkage and secondary use of personal information are expanding rapidly.⁹

The Irish context: Building a culture of involvement

Nationally, we have made strides embedding PPI into both health research and health service planning. The Health Research Board and Research Ireland have played central roles in advancing this agenda, supporting the development of national infrastructure through the PPI Ignite Network, fostering training, support, and culture change across universities and research centres.

National policies such as Sláintecare and the Digital Health Framework for Ireland (2024-2030) also emphasise partnership with patients and the public as central to achieving more equitable, person-centred, and effective healthcare.^2,10

This commitment is further reinforced by the publication of the HSE’s Better Together: The Health Services Engagement Roadmap, which outlines a structured approach to embedding engagement across all levels of the health service. The roadmap sets out clear actions for involving patients, service users, carers, and communities in decision-making, service design, and improvement processes, reflecting the HSE’s growing emphasis on collaboration, transparency, and shared accountability.

About Converge and its PPI panel

Converge is dedicated to harnessing population-level data to improve understanding of both disease trends and also prevention and management of chronic diseases such as diabetes, cardiovascular disease, and obesity. Recognising the importance of PPI within population data research, the centre has established a PPI panel focused on diabetes research.

This panel ensures that the voices of people affected by diabetes shape every stage of the research process, from setting priorities and refining methodologies to interpreting findings and communicating outcomes. The goal is not simply consultation, but co-creation – a shared process where patients and researchers work as equal partners.

To build a diverse and representative panel, the team employed a multi-pronged engagement strategy. Social media platforms such as X, Facebook, and Instagram were used to reach potential contributors, alongside direct outreach to patient advocacy and support groups. Inclusivity was a central principle. Efforts were made to ensure participation from individuals across diverse demographic, socioeconomic, and geographic backgrounds.

The first PPI panel meeting, held in April 2025 with 12 contributors, provided valuable insights into both the strengths and challenges of this approach. During this session we explored what panel members hoped would be gained from being part of this panel, introduced them to the concept of PPI, talked through the research cycle, and provided an overview of Converge and the work we do.

For us as researchers, one of the most significant lessons was the impact of language. During the meeting, panel members were asked: “When you hear the word research what comes to mind?”, followed up by “do you think research is approachable?”.

It became clear that while the word ‘research’ is commonplace within academia, it was felt by some participants as abstract or disconnected from their everyday experiences. This created an unintended barrier to engagement. Adopting plain, practical language that resonates with daily life proved crucial for building rapport and understanding.

Another key insight was the importance of fostering a shared sense of purpose and continuity. Participants valued transparency about how their input would shape ongoing work. As a result, Converge plans to co-design continuing engagement strategies with PPI partners, incorporating regular opportunities for feedback, updates on outcomes, and open dialogue about emerging research directions.

Implications for future practice

The early experiences of Converge highlight several actionable lessons for researchers integrating PPI into data-driven studies:

• Language matters: Avoid overly technical terms and co-develop materials that use accessible,
  relatable language.
• Sustain involvement: Move beyond one-off consultations and embed PPI throughout the research lifecycle.
• Diversify recruitment: Use multiple outreach channels to reach underrepresented communities.
• Close the feedback loop: Clearly communicate how public contributions influence outcomes.
• Share learning across sectors: Disseminate practical insights with healthcare providers, policy-makers, and other research groups.

Future work will explore how best to sustain long-term participation and integrate PPI across multiple projects within Converge. Findings will also be shared with national and international partners to strengthen Ireland’s leadership in patient-centred population health research.

Conclusion

The success of PPI in data-driven diabetes research depends on a shift in both mindset and practice. Researchers must see patients and the public not merely as data sources but as knowledge partners whose lived experience provides critical insight into the meaning and application of research findings.

As Ireland continues to build national capacity in health data infrastructure, embedding PPI from the outset will be essential.¹ Doing so will ensure that advances in big data are guided by public values, fostering research that is ethical, inclusive, and socially relevant.