All time references are in CEST
Integrating Participant Voice in Study Design through PPIE |
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| Session Organisers | Ms Meghan Rainsberry (UCL Centre for Longitudinal Studies) Ms Alyce Raybould (UCL Centre for Longitudinal Studies) |
| Time | Tuesday 18 July, 09:00 - 10:30 |
| Room | |
In recent years, Participant and Public Involvement and Engagement (PPIE) has become an increasingly crucial element in ensuring that research studies are not only relevant and impactful but also inclusive and ethically grounded. By actively incorporating the perspectives of participants and the public, survey practitioners can address real-world needs and concerns, thereby enhancing the quality of their research and applicability of their findings. As new forms of data collection and linkage evolve, it is important to gather participant views on the acceptability and feasibility of these new methods. Moreover, research funders and ethics boards are increasingly viewing PPIE as a fundamental component of research projects. A variety of different approaches can be used including participant panels, focused qualitative projects and public dialogue discussions.
In this session we will explore and showcase methods for embedding participant voices throughout the research process, from initial design to analysis and impact This may include PPIE work on engagement, accessibility and inclusivity in surveys, including recruitment of ‘less often heard’ groups, work on public acceptability and trust as well as on specific design choices such as questionnaire content, mode and incentives.
We are seeking presentations that highlight successful applications of PPIE, including:
• Case Studies: Examples where participant engagement has had a significant impact on study design and outcomes.
• Participatory Techniques: Approaches such as co-design workshops, advisory panels, feedback surveys and other mechanisms that facilitate meaningful involvement of participants.
• Challenges and Solutions: Strategies for navigating common challenges like managing expectations, ensuring diverse representation of and feedback to participants.
Dr Alyce Raybould (University College London) - Presenting Author
Professor Lisa Calderwood (University College London)
Professor Alissa Goodman (University College London)
Professor Pasco Fearon (University College London and University of Cambridge)
Dr Erica Wong (University College London)
Ms Karen Dennison (University College London)
The Early Life Cohort Feasibility Study (ELC-FS) is testing the feasibility of conducting a new UK-wide birth cohort study, by collecting information about several thousand babies aged between 8-12 months old, and their families in 2023-2024. One of the aims of the feasibility study is to maximise inclusion of typically under-represented groups through the choice of sampling frame, sample boosts and tailored participant engagement strategies. The study carried out extensive consultation and research with parents and young people to inform these design decisions which this talk will summarise. One key group the study aimed to recruit and retain in the study was fathers, and public engagement activities (PPIE) were used to understand more about motivations and barriers for their participation.
A key innovation for this study was the use of a sampling frame in which hospital birth notifications were linked to birth registration data, which meant that both fathers and mothers, including those living in their own households, could be directly recruited to the study. This includes ‘own household fathers’ (OHFs) who do not live full-time with their child. Previous cohort studies have shown that OHFs tend to be involved with their child’s upbringing during the perinatal period; however, they tend to be under-represented in family surveys, despite comprising about 15% of fathers of babies in the UK.
PPIE was conducted prior to the study with a diverse group of fathers and OHFs to understand more about how to recruit and engage them in longitudinal family research. We discuss how fieldwork protocols and response maximisation efforts were designed to incorporate learnings from PPIE. We also present response rates for resident fathers and OHFs, and discuss how these may have been influenced by PPIE learnings using evidence from fieldwork outcomes and interviewer feedback.
Ms Katherine Wyatt (Murdoch Children's Research Institute)
Dr Elizabeth Hughes (Murdoch Children's Research Institute)
Ms Alisha Gulenc (Murdoch Children's Research Institute)
Dr Susan Clifford (Murdoch Children's Research Institute) - Presenting Author
Mr William Siero (Murdoch Children's Research Institute)
Dr Jessica Bell (University of Warwick)
Professor Melissa Wake (Murdoch Children's Research Institute)
BACKGROUND: Participant and Public Involvement and Engagement (PPIE) is increasingly recognised as a pivotal aspect of research by the scientific community, funders, ethics and governance bodies, participants and the general public. PPIE has the potential to improve all stages of research, from study design through to dissemination of findings. Meaningful PPIE can take various forms, but suitability depends on many factors including the type of research, as well as participant characteristics such as number, age (minors) and accessibility (language, education, location). This presentation will provide an overview of learnings from other longitudinal research and our own approaches to PPIE at scale for Generation Victoria (GenV).
METHODS: GenV is Australia’s largest birth and parent cohort (>123,000 participants). We have sought to engage with parents, community groups and international longitudinal studies throughout initial design and implementation. Ongoing, we seek input from our large, geographically-disperse cohort through the GenV Participant Advisory Panel (established in early 2023) and instant survey feedback prompts.
RESULTS: PPIE strategies reported by other longitudinal studies ranged from brief or one-off activities through to in-depth, ongoing or larger-scale initiatives. Similarly, prior to implementation, we engaged >700 current and expectant parents in focus groups, pilots, and surveys to inform design, messaging and materials. Now, >1000 participants have volunteered for the GenV Participant Advisory Panel to give ongoing input. We will showcase the breadth of the Panel and their contributions to date including their views on recruitment, consent, and data management in research .
CONCLUSIONS: GenV lends an example of PPIE in a diverse and geographically-disperse mega-cohort. Alongside learnings from other longitudinal studies, GenV can provide strategies and address the challenges of PPIE in research at large scale.
Dr Aisling Murray (DCEDIY) - Presenting Author
Dr Eoin McNamara (DCEDIY)
Mr Derek Nolan (DCEDIY)
Dr Anthony O'Reilly (DCEDIY)
Mr Caolan Rooney (DCEDIY)
As the Government sponsor for a new birth cohort – to join the two existing Growing Up in Ireland cohorts – specifying the requirements for a given wave is a fundamental part of ensuring the study is useful and value for money. However, the study must also reflect the wider lived experience of young children and their families to understand what are generally thought of the key policy-relevant characteristics in context.
For age 3 of Cohort 24, expected to be in the field in 2027, the study team at the Department of Children, Equality, Disability, Integration and Youth (DCEDIY) cast a wide net in consultations for topics to be included in the survey. This included reviewing the instrumentation from a wider range of other studies than usual to look beyond the usual West European comparators. There were consultations with two established panels of experts comprising researchers, NGOs and policy-makers. To provide more insight into the contemporary lived experience of families, there were two focus groups with parents.
The most innovative feature of the scoping exercise was, however, a direct consultation with children aged 3 and 4 years. These were conducted on behalf of DCEDIY with two groups of children in their early learning settings using methods such as drawing, play-doh, photographs and puppets. While there were challenges and lessons learned from the experience, the children did identify some unique themes which had not arisen through the other channels such as their interest in the natural world and the importance of friends.
This paper will provide an overview of the potential contribution of each of the different consultation streams, lessons learned, with a special focus on the consultation with very young children.