Abstract
BackgroundBirth cohort studies, where parents consent for their child to be enrolled in a longitudinal study prior to or soon after birth, are a powerful study design in epidemiology and developmental research. Participation often continues into adulthood. Where participants are enrolled as infants, provision should be made for consent, consultation and involvement in study design as they age. This study aims to audit and describe the extent and types of consultation and engagement currently used in birth cohorts in Europe.MethodsSeventy study groups (representing 84 cohorts) were contacted to ask about their practice in engaging and involving study members. Information was gathered from study websites and publications, 15 cohorts provided additional information via email and 17 cohorts were interviewed over the phone.ResultsThe cohorts identified confirm the growth of this study design, with more than half beginning since 1990, and 4 since 2011. Most studies maintain a website open to the general public, although many are written for the scientific community only. Five studies have web pages specifically for young cohort members and one study provides a dedicated page for fathers. Cohorts send newsletters, cards, and summaries of findings to participants to stay in touch. Six cohorts use Facebook for this purpose. Five cohorts provide feedback opportunities for participants after completing a round of data collection. We know of just 8 cohorts who have a mechanism for consulting with parents and 3 a mechanism for consulting with young people themselves, although these were ‘one off’ consultations for some groups. Barriers to further consultation with cohort members were: concerns about impact on quality of research, ethical constraints, resource limitations, lack of importance, and previous adverse experiences.ConclusionsAlthough the children in some of the cohorts are still young (born in the last 10 years) many are old enough to include some element of consultation. Barriers to greater participation identified here have been overcome in some cohorts and in other fields. Within the scope of their funding and resources, birth cohort studies should consider ways in which they could increase engagement, consultation, and co-production with research participants.
Highlights
Birth cohort studies, where parents consent for their child to be enrolled in a longitudinal study prior to or soon after birth, are a powerful study design in epidemiology and developmental research
Young people may advise on the accessibility of publications to other young people and in public events can have a greater impact on audiences than adult researchers [8,9]
The recent growth in interest and investment in this study design is apparent in the numbers of studies identified
Summary
Birth cohort studies, where parents consent for their child to be enrolled in a longitudinal study prior to or soon after birth, are a powerful study design in epidemiology and developmental research. Where participants are enrolled as infants, provision should be made for consent, consultation and involvement in study design as they age. It is argued that greater involvement of the public in research leads to better research outcomes through improvements to data quality, data collection, and, in time, dissemination [1,2,3,4,5,6]. This may be true for children and young people because of the likely greater difference between their experiences and those of adult researchers. The small literature that documents changes resulting from greater involvement of the public and participants [2,12,13]
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