50 % Response rates: half-empty, or half-full?

When the Black Women’s Health Study, a prospective cohort of over 59,000 women who have been followed since 1995, invited all of its participants to provide a DNA sample for future research, only 51 % of those participants agreed to do so. Responders were significantly older and more health conscious than non-responders. The Black Women’s Health Study is a unique resource, but this low level of response and its resulting self-selection bias are now the norm in contemporary epidemiologic, and especially cohort, studies. Epidemiology desperately needs new approaches that work better and cost less. The literature on predictors of response focuses too narrowly on participant characteristics and does not identify any clear steps studies can take to increase participation. To improve research quality, cost-efficiency, and long-term sustainability of studies, epidemiology can and should approach, analyze, and leverage response-rate data more creatively and extensively than most studies have done to date.