PPI in Preconception Health Research

This report was written by Miss. Emma Cassenelli, Research Fellow, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast.

The QUB PPI Network Seed Fund helped support activities carried out in the Centre for Public Health related to the field of preconception health. Generally speaking, preconception health is taken to refer to the health behaviours, risk factors, and wider determinants of health for individuals of reproductive age which can impact maternal, infant, and child outcomes.

The PPI activities were carried out as part of a PhD programme, the primary aim of which was to use pre-existing data (e.g., administrative datasets) to ultimately inform pathways for future interventions to improve individuals’ preconception health. 

Research Need and Role of PPI

Preconception health is associated with parental, pregnancy, and infant outcomes and, therefore, it can have positive transgenerational impacts through the development and long-term health of offspring. Evidence shows that members of the public share a willingness and desire to be informed on preconception-related topics, suggesting that they can directly drive and shape research and interventions that hold the potential to improve individuals’ preconception health and pregnancy outcomes. 

Different approaches to implementing PPI can be adopted depending on the research methods and topic. PPI was implemented in evidence synthesis (i.e., a scoping review) and data-driven research (i.e., research using administrative data) relating to preconception health. Notably, researchers set out to embed significant and meaningful PPI throughout the research process, as an integral component. This was undertaken with the aim of producing meaningful research on preconception health and care, that is relevant, interesting, and shaped by the public. Different approaches were used across the research cycle, including:

• Planning and defining research questions and methods,

• Prioritising,

• Interpreting findings, and 

• Disseminating results.

Inviting PPI contributors to events such as academic conferences was a further key desired outcome of the PPI activities.

QUB PPI Seed Funding

PPI Seed Funding was used in a variety of ways (as illustrated in the figure below, which also shows the number of PPI contributors at each activity). Initially, efforts were dedicated to the overall planning of PPI activities and the development of a PPI advisory group (the Healthy Reproductive Years advisory panel). Once a panel was formed, with 24 members of reproductive age residing in Northern Ireland when recruited, two initial online sessions were organised. These sessions primarily aimed to provide PPI representatives with background information on preconception health and care and the proposed research, and allow for rapport building and discussions on the development of the Healthy Reproductive Years advisory panel. Thereafter, panel members collaborated with researchers on a scoping review of strategies, policies, guidelines, frameworks, and recommendations addressing preconception health and care in the UK and Ireland. Methods for active engagement included contributing to a draft protocol to ensure the relevance and patient-centeredness of the review, commenting on a comprehensive write-up of preliminary results, and shaping the manuscript drafted for publication. Members of the PPI advisory panel were also invited to support the secondary analysis of administrative data included in the Northern Ireland Maternity System (NIMATS). Panel members were invited to collaborate on the application to access NIMATS data and, following data access, PPI was implemented for prioritisation purposes. Further PPI was undertaken with panel members when a collaboration with Health Data Research (HDR) UK was established for the NI Science Festival 2024. The organised activities allowed engagement with approximately 400 members of the public outside of the panel, including families and children, with the aim of conveying messages on the complexities of administrative data and preconception health and care. At a later stage of the research, once the NIMATS data had been cleaned and analysed, PPI activities were further organised to support the interpretation of the findings (e.g., trends in folic acid supplement use), check the validity of the conclusions, and discuss future recommendations for the optimisation of preconception health and care in Northern Ireland. For this, a workshop was held in collaboration with SureStart East, a programme that aims to support parents with children aged under four years old living in disadvantaged areas in NI. 

Impact of PPI on Research Outputs

The organised PPI activities impacted the research carried out in a variety of ways. For instance, PPI contributors assisted in the identification of priorities (i.e., preconception indicators were prioritised by PPI contributors to inform analyses of administrative data), interpretation of findings (e.g., discussions on findings from administrative data analyses concerning folic acid supplement use), and dissemination (e.g., co-creation of graphs to include in publications and conferences, co-authorship of peer-reviewed publications).

Another key output includes the attendance of PPI contributors to relevant events such as the UK Preconception EMCR Network conference in 2023 and 2024, which provided an opportunity for people with lived experience to listen to novel research in the field of preconception, ask questions to researchers, raise concerns, and participate in discussions (e.g., during workshops). 

Feedback to PPI Contributors

The relationship established between researchers and people with lived experience was sustained throughout by regular contact. This was done primarily through email exchanges and newsletters. A dedicated newsletter, the Healthy Reproductive Years Newsletter, was established early on in the development of the panel. Newsletter issues were distributed to panel members on a regular basis, discussing relevant research progress and plans for future involvement. Newsletter issues also informed panel members about how their feedback was implemented to inform the research, shared details of other PPI opportunities within the university, and invited them to attend activities and events (including the aforementioned UK Preconception EMCR Network conferences).

Figure 1: Patient and Public Involvement throughout Preconception Research Program