Linking decedents and their family members to study multiple end-of-life outcomes in various settings from a...

Rigorous empirical end-of-life studies of decedents and families can help healthcare practitioners provide optimal healthcare experiences. Such studies are increasingly important as populations age, placing increasing caregiving loads on patients' families. But patient family data are difficult and expensive to obtain through traditional survey methods. Population registries can complement other research methodologies by permitting large numbers of study subjects and linking family members to decedents. From the Utah Population Database, we formed the Utah Caregiving Population Sciences (C-PopS) cohort, a detailed data registry of Utah adults who died of natural causes between 1998-2016 and their first-degree Utah-residing family members, including key demographic data and health records two years before and after death. Organizing data tables at distinct levels permitted efficient data utilization by researchers with different skills and expertise. The resulting scalable infrastructure included a cohort of 217,222 Utah decedents and 744,368 decedent kin pairs; and enabled production of multiple end-of-life studies for many different health outcomes in various healthcare settings.•An end-of-life decedent-family population registry can facilitate studies that are not otherwise feasible.•Data controls ensure reliability, validity, and ethical compliance.•Distinct levels of decedent-family data tables permit scalable production of multiple end-of-life studies.