Improving Aboriginal health data capture: evidence from a health registry evaluation

Abstract

The lack of high-quality health information for accurately estimating burdens of disease in some Aboriginal populations is a challenge for developing effective and relevant public health programmes and for health research. We evaluated data from a health registry system that captured patient consultations, provided by Labrador Grenfell Health (Labrador, Canada). The goal was to evaluate the registry's utility and attributes using modified CDC guidelines for evaluating surveillance systems. Infectious gastrointestinal illness data were used as a reference syndrome to determine various aspects of data collection and quality. Key-informant interviews were conducted to provide information about system utility. The study uncovered limitations in data quality and accessibility, resulting in region-specific recommendations including conversion to an electronic system. More generally, this study emphasized how a systematic and standardized evaluation of health registry systems can help address challenges to obtaining quality health data in often remote areas where many Aboriginal communities are found.

A Review of Data Quality Assessment Methods for Public Health Information Systems

“…The main aims of the studies are assessing the quality of data (19 publications [30,34,42,44,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60]) and assessing the performance of the PHIS (17 publications [15,22,34,40,42,45,50,58,61,62,63,64,65,66,67,68,69]). Five studies assessed data use and explored the factors influencing data use [26,27,52,70,71].…”

“…Two studies were related to tuberculosis [46,61]. Other contexts included multi-disease surveillance system, primary health care, acute pesticide poisoning, road data or road safety, aboriginal health, monkey pox, and cancer [22,26,51,52,55,59,66,74]. In addition, clinical information management was studied in four research papers [50,54,62,71].…”

“…All of the institutional publications and 28 research papers, a total of 35 articles, conducted assessment of the quality of data [15,22,30,34,40,42,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,72,73,74]. Matheson et al introduced the attributes of data quality but did not give assessment methods [71].…”

Weather, Water Quality and Infectious Gastrointestinal Illness in Two Inuit Communities in Nunatsiavut, Canada: Potential Implications for Climate Change

“…It is difficult to make inferences regarding apparent differences between IGI patient visits reported here compared to other regions due to differences in study design and regional variations. For example, the British Columbia and Ontario studies captured physicianreported IGI-related patient visits, whereas this study used clinic registry patient visit data (Harper et al, 2010). Furthermore, the dissimilarities in IGI-related patient visit trends could be due to the very different health care settings between the three studies.…”

“…Daily counts of de-identified IGI-related cases presenting to Labrador Grenfell Health clinics in Nain and Rigolet were obtained from historic 'E-Book' Health Registries, a paper-based system which logged descriptions of all patient visits to the clinics. A more detailed description of the E-Book Health Registry, as well as the quality, completeness and validity of the data captured by this system are presented elsewhere (Harper et al, 2010).…”