Background Under-representation of ethnic minorities in cohort studies is common. The Determinants of (now) Adult Social well-being and Health (DASH) study examines how interaction of social and biological exposures influences ethnic differences in physical and mental health over the life course. It started 10 years ago with 6643 11-13y London schoolchildren, 80% ethnic minorities. A feasibility study examined best practice for follow-up of the cohort now aged 21-23y.
Methods 300 DASH participants, 50 for each major ethnic group (White British, Black African, Black Caribbean, Indian, Pakistani and Bangladeshi), were invited. They were offered assessments in different locations (GP surgeries, community pharmacies, clinical research facilities, homes, colleges) to collect a range of questionnaire and physical data (e.g. age appropriate mental health measures, 24 hour dietary data, accelerometry, blood biomarkers, arterial stiffness, bio-impedance). Consents were sought for DNA analysis, linkage of NHS records and to contact parents to participate in a generational study. Various retention and engagement initiatives were tried, including social media, a participant advisory group (PAG) and ‘Bring a DASH friend’ (BDF).
Results <1% refused, 45% of participants were seen in a university setting, 19% in pharmacies, 28% in GP surgeries, and 7% in clinical research facilities. GP surgeries were keen to support DASH but busy environments compromised quality and pace of data collection. High street pharmacies proved ideal locations for satellite clinics. The primary influence on participants’ choice of location was proximity to home or convenience to stop en route from work. Item non-response for questionnaire-based measures and refusal rates for wearing monitors were low (<1%). Less than 5% refused to have bloods taken, with no ethnic bias. All were keen to get feedback on results, particularly cholesterol level, and consented to storage of bloods for DNA and for linkage of NHS records. 81% of the baseline cohort was traced using multiple measures. Three key initiatives worked best: PAG’s input on appropriateness of measures, retention and advocacy including use of social media; BDF due to continuing contact with school friends; and a community link worker to conduct advocacy activities in community-based spaces such as markets and places of worship, and to engage community champions. All participants agreed to contact with parents.
Conclusion These positive findings challenge conventional wisdom on underrepresentation of ethnic minorities in cohort studies. They also suggest effective mechanisms to enhance engagement with diverse communities and exploit the public health value of findings across ethnic groups.
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