Developing and Maintaining a Population Research Registry to Support Primary Healthcare Research

Abstract

What did we do? This paper describes the creation of a population research registry as part of an information system to support primary healthcare (PHC) research in British Columbia. The population registry includes all residents of the province who were either eligible to use or actually used healthcare services, together with demographic, geographic, health status, registration and service use data. The PHC population research registry is built using administrative data inputs, and data are anonymized to comply with privacy and confidentiality standards. What did we learn?The registry provides data to undertake research into PHC needs and service utilization. It facilitates both population-based research as well as research on population subgroups. Combined with anonymous physician and utilization data, the information system can be used to study service utilization rates for populationbased analyses. Over the longer term, the information will contribute to our understanding of PHC qualities and outcomes.What are the implications? Continued completeness of the population research registry depends upon full administrative source data. Planning to ensure complete data capture is critical both for the research registry and our ability to undertake populationbased PHC research. RésuméCe que nous avons fait : Cet article décrit la création d'un registre de recherche démo-

Outcomes research resources in India: current status, need and way forward

“…They are essential to understand clinical and epidemiological trends as well as useful for policy analyses, planning and management of health care resources. (Roos and Nicole, Roos and Nicol 1999) (Broemeling et al 2009). Databases are usually study specific or project specific.…”

Ethical Use of Administrative Data for Research Purposes

“…curing cancer or improving Medicare services) may not want their data used for other types of research (e.g., abortion or stem cell studies). Chamberlayne et al (1998) and Broemeling, Kerluke, and Black (2009) described the creation of a population-based provincial registry in British Columbia, CA. 2 Both articles highlighted the importance of protecting individual privacy while recognizing the value of data linkage and population-based registries.…”

“…These challenges include (1) poor quality of administrative data, (2) statistical significance without meaningfulness, and (3) the use of multiple statistical tests that capitalize on chance, and post hoc interpretations. Many other authors have expressed concerns associated with the quality of administrative data (Broemeling et al, 2009;Mason, 1986;Rabeneck, et al, 2001), however, Segal (2003) argued that some of these concerns of scientific merit are not limited to research conducted using administrative data, but rather apply to how well any research methods allow the investigator to adequately address the question at hand.…”

Measuring the Performance of Primary Healthcare: Existing Capacity and Potential Information to Support Population-Based Analyses

“…Two papers in this special issue (Broemeling, kerluke et al 2009 andWatson, Peterson et al 2009) assess the degree to which completeness and accuracy of administrative data are eroding for measurement of provider and population perspectives of PHC and what can be done so that administrative data can still be used for performance measurement in Canada.…”