Taking guidance from parents involved in a longitudinal birth cohort – the ROLO family advisory committee

Abstract

Background: The ROLO Study (Randomised cOntrol trial of a Low glycaemic index diet in pregnancy to prevent macrosomia) was a randomised control trial conducted between 2007 and 2011 to examine if a low glycaemic index (GI) diet could reduce the incidence of macrosomia. The ROLO Family Advisory Committee is a self-selected group of parents who are involved in the longitudinal follow-up of the ROLO Study. The committee was established in 2017 and the goal is to achieve a partnership between ROLO families and researchers, leading to improved research quality, relevance, and outcomes. This research method is termed "Public and patient involvement (PPI)" and describes how researchers collaborate and engage with the public in order to make research more relevant to them. Methods: The ROLO study mothers and children have been prospectively followed-up at multiple time points postpregnancy. In October 2017, all women were invited to join the ROLO Family Advisory Committee via email or via advertisement on the ROLO Study Facebook page. Fathers and other guardians of the study children were also invited to join. Two annual meetings with the research team and parents were held in 2018 and 2019. The meetings were recorded, transcribed verbatim by researchers, and thematically analysed. Results: Parents provided opinions on the areas they felt should be explored within the ROLO study using information that was collected up to the current follow-up point. They also shared views on research interests which were of importance to them. These topics included; child mental health, fussy eating in childhood and healthy eating policies in schools. Mothers were much more concerned about factors which influenced their child's health rather than their own. Incorporating an element of PPI to this study was found to be a positive learning experience for participants and researchers. Conclusion: The involvement of parents has enriched the research agenda at the UCD Perinatal Research Centre. We will continue to engage with the parents of the ROLO Study and plan to involve the children to explore their opinions at the next opportunity.

Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study

“…The results showed higher acceptance and retention of the study than expected. An ongoing cohort study used social media (Facebook) for PPI by creating a closed group of patients and families to bring new ideas to the project [80]. Meetings with a family advisory committee were organized regularly.…”

Including the child’s voice in research from a longitudinal birth cohort: insights from the ROLO young person’s advisory group

“…The ROLO Family Advisory Committee was established in 2017. This group of parents from the original ROLO study expressed interest in meeting annually to identify research priorities and provide their opinions on research [16]. This partnership has enabled mutual learning opportunities, successful grant funding applications, and a recent collaborative publication between researchers and parents on the role of PPI in the ROLO study [16].…”

“…This group of parents from the original ROLO study expressed interest in meeting annually to identify research priorities and provide their opinions on research [16]. This partnership has enabled mutual learning opportunities, successful grant funding applications, and a recent collaborative publication between researchers and parents on the role of PPI in the ROLO study [16]. Discussion with the group raised the importance of also listening to the child's views about our research and proposed the establishment of a PPI group for the ROLO children [16].…”

“…This partnership has enabled mutual learning opportunities, successful grant funding applications, and a recent collaborative publication between researchers and parents on the role of PPI in the ROLO study [16]. Discussion with the group raised the importance of also listening to the child's views about our research and proposed the establishment of a PPI group for the ROLO children [16]. It is important to acknowledge the needs of PPI participants and researchers are obliged to take heed in future practice [4].…”

“Could you give us an idea on what we are all doing here?” the Patient Voice in Cancer Research (PVCR) starting the journey of involvement in Ireland

“…There is a diverse and growing literature capturing the various ways of undertaking public and patient involvement (PPI) in health and social care research [1,2,3,4]. Our working definition of public and patient involvement, is that it is an inclusive enabling process where research is carried out 'with' or by' members of the public [2,4].…”