Public Engagement Across the Data Research Lifecycle – Rapid fire presentations

Authors: Heather Mah (1), Michael Natt, Sarah Barley-McMullen, Yvonne Adler, Farheen Yameen, Janice Elliott, Em Prestige, Mengxuan Zou, Shrinkhala Dawadi, Luisa M Pettigrew, Emily Herrett, Venexia Walker, Michael Marks, Jonathan Sterne, Alex Walker, Jaidip Gill, Sebastian Bacon, Colm Andrews, Matt Curtis, Chris Bates, Lizzie Huntley, Amir Mehrkar, Laurie Tomlinson, Ben Goldacre, Rohini Mathur, Edwin van Leeuwen, Ruth E Costello, Rachel Denholm, John Macleod, Gene Feder, Rosalind M Eggo

1 London School of Hygiene and Tropical Medicine

Abstract

There is increasing expectation and recognition of the benefits and value of including patients and public contributors in research publications. However, there is limited guidance on how to do this, particularly in data-driven research using patient electronic health records (EHR). We present a co-produced approach to developing guidance on public co-authorship.

Drawing on two studies that explore winter pressures in primary care and respiratory virus risks, we worked with a patient advisory group to explore how contributors can effectively be involved throughout the publication process. This was informed by ongoing involvement activities and included six contributors with different backgrounds in age, gender, ethnicity, socioeconomic status, and experiences of chronic illness, disability, and being carers. This abstract was co-authored with members of the advisory group in line with the co-produced guidance developed through this work.

We regularly met with contributors before drafting manuscripts to discuss ongoing interpretation and presentation of results. We held an online workshop to discuss: time for reviewing, payment, communicating feedback, and reviewing technical drafts. This workshop and subsequent feedback informed the development of practical guidance for patient co-authorship. We identified key considerations including: clarifying roles and expectations across the publication stages, balancing the use of technical concepts for academic audiences with public perspectives, providing contributors with a lay summary and specific questions, supporting contributors to give useful feedback, and informing contributors how their input informed the research output.

We also worked through different challenges including negotiating authorship criteria, including contributors’ comments while respecting anonymity, and technical aspects involved in producing and publishing a manuscript. This is an ongoing process that requires flexibility and regular discussions with contributors and researchers. We are sharing these learnings through conference presentations, publications, and blog posts to contribute to, and engage in, wider discussions about public co-authorship.

Authors: Ayaan Farah (1), Claire Newman, 30 PPIE group members

1 MAGENTA

Abstract

MAGENTA is an ongoing multidisciplinary research project, investigating how elevated/prolonged heat exposure during pregnancy affects health outcomes for mothers and babies in Wales and London. Using linked climate and pregnancy cohort data, the project aims to inform policies that protect vulnerable populations.

From inception, MAGENTA has embedded patient and public involvement and engagement (PPIE) as a core component. A diverse group of 30 public contributors from across the UK meets monthly, shaping the study’s design, interpretation, and communication. Their input has influenced key aspects of the project, including a greater focus on local-level analysis in areas with limited green space or older housing stock, where heat exposure may be higher, and improving the accessibility of public-facing materials (e.g., a recent lay report outlining initial research findings).

This work demonstrates how PPIE can be integrated across the full data research lifecycle, from design through to dissemination. A key challenge has been sustaining engagement while supporting contributors to engage with complex, data-driven research. Addressing this has required building understanding, ensuring transparency around data use, and situating findings within the wider research aims.

The emphasis is not on PPIE as a procedural exercise, but as an iterative practice that evolves through dialogue, reflection, and responsiveness to public insight. It recognises that researchers do not hold all the knowledge needed for this work, and that meaningful PPIE brings essential perspectives that strengthen the project at each stage.

The session will be co-presented with a PPIE member and will include brief audience reflection and touch on practical considerations for sustaining informed involvement over time. Key takeaways are that early and sustained involvement improves relevance, co-production strengthens research and relationships, and meaningful engagement depends on equipping contributors to participate fully.

Authors: Corinna Clark (1), Sophie Staniszewska, Edward Hill, Phuong Bich Tran, Stavros Petrou, Matt Keelling

1 University of Warwick

Abstract

Patient and Public Involvement and Engagement (PPIE) has historically been underdeveloped within mathematical and health economic modelling. This reflects assumptions that modelling is inherently objective, technical, and governed by fixed rules, leaving limited scope for public contribution. It is also often perceived as inaccessible to non-specialists, creating barriers to meaningful engagement.

We will present the MEMVIE (Mathematical and Economic Modelling for Vaccination and Immunisation Evaluation) programme, which challenges these assumptions. MEMVIE embeds co-produced PPIE within modelling processes directly informing UK vaccination policy. MEMVIE brings together interdisciplinary expertise in epidemiological modelling, health economics, and PPIE, alongside a diverse public contributor group.

In its first phase, MEMVIE co-produced a novel PPIE framework to identify where and how public contributors can shape modelling. The framework demonstrates that involvement can occur across all stages, including reviewing context and relevance, interrogating data sources, informing model assumptions, and interpreting outputs for decision-making. It also articulates key values underpinning PPIE in modelling, including enhancing validity, transparency, and credibility.

Following a pandemic-related pause, activities re-established in 2023 with an expanded contributor group. This phase focusses on applying and refining the framework in practice. Contributors have shaped modelling, and research into the quality of data used in health economic evaluations. They have co-produced wider engagement outputs such as public-facing events and animations to improve accessibility of modelling concepts.

Importantly, through MEMVIE we are extending the PPIE influence into policy. Together, we are exploring how public voices can provide both critical context to model outputs and help with translating policy decisions into accessible messages. Both of these being crucial to transparency and public trust.

MEMVIE demonstrates that, far from being incompatible, PPIE can strengthen mathematical modelling by improving its relevance, robustness, and legitimacy. The project offers a transferable framework for embedding meaningful co-production in complex, data-driven research that underpins high-stakes policy decisions.

Authors: Ruth Jack (1), Debbie Butler (2), Dave Waldram (2), Louisa Gerrard (2)

1 University of Nottingham, 2 Public Contributor

Abstract

Background
Patient and public involvement (PPI) is essential to health and social care research, ensuring that any questions are relevant and important to the people who are most affected. Many PPI training courses focus on studies which recruit participants, leaving gaps in work with secondary data.

Objective
We aimed to create a way of working demonstrating meaningful PPI in large electronic health database research.

Methods
Researchers, public contributors and PPI managers collaborated to identify what would be most helpful in maintaining public contributors’ involvement throughout the research process for studies using large electronic health record databases.

Results
We developed a comprehensive approach to involve public contributors throughout project lifespans. Public contributors helped develop research questions, were co-applicants on funding bids, and attended both project and PPI-focused meetings. During the analysis phase, we met regularly to discuss project progress, including providing information about developing code lists and analysis techniques. Towards the end of the project we provided a session on interpreting statistical outputs (including graphs, p-values and confidence intervals) so that the public contributors could interpret results. We created an online training course with an accompanying handbook, and an animated video about public contributors’ experiences working on the project. The online training course included information about electronic health database research, improving knowledge and trust in such studies. Public contributors co-authored peer-reviewed publications and co-presented study results at national conferences.

Conclusion
Meaningful patient and public involvement is possible throughout studies using large electronic health databases and complex statistical analyses. Fostering a collaborative environment and keeping public contributors updated and involved enhances their understanding of the methods used and ownership of the research. This ensures that research remains relevant and impactful to those it aims to benefit, leading to more effective health and social care research.”

Authors: Sophie Patterson (1), Liza Caruana-Finkel, Parastoo Abdoli, Felicity Dobrushi, Karen Downing, Demice Watson, and Jasmine Fledderjohann on behalf of ReproNorth

1 Lancaster University

Abstract

Background

Reproductive justice (RJ) centres core rights to: bodily autonomy, not have a child, have a child, and parent in safe and healthy environments, prioritising marginalised people’s experiences. It is an important but underutilised lens for understanding and addressing violence against women and girls (VAWG), a UK governmental priority.

Aim

Applying an RJ lens, we conducted a participatory narrative review to explore how violence impacts reproductive choice in England, allowing space for integration of lived perspectives and ‘non-traditional’ forms of knowledge.

Ways of working

We built upon extant relationships through ReproNorth (a network focusing on RJ in northern England which unites academics, grassroots organisations, and people with lived experience of inequity) to engage 7 community co-researchers with representation of survivors of violence and people marginalised by gender, race, migrant status, and sexuality. Prioritising wellbeing of research partners, we adopted a trauma-informed approach that was grounded in a feminist ethic of care.

We hosted an interactive, scribed workshop to co-create a narrative review protocol. Through this process, we co-identified a shared goal to make unspoken/unseen parts of research explicit by interrogating interpretations of violence. In doing this, we sought to understand perspectives and experiences that are missing in traditional evidence and in the government’s plan to halve VAWG in a decade. We integrated training in storytelling, acknowledging its power as a tool to integrate lived perspectives, engage diverse audiences, and drive social change. We fostered equitable relationships between partners by integrating additional training responsive to community co-researchers’ self-identified needs, supporting partners to acquire tools to apply in their own work/lives.

Knowledge sharing

Knowledge sharing through consciousness raising and ‘calling people in’ was co-identified as a priority for this project. We ringfenced a dissemination budget, with spend determined by co-created plans for knowledge sharing to increase impact and accessibility of findings.