scholarly journals Factors Affecting Access to Administrative Health Data for Research in Canada: A Study Protocol

2021 ◽  
Vol 6 (1) ◽  
Author(s):  
Cynthia Kendell ◽  
Adrian Levy ◽  
Geoff Porter ◽  
Elaine Gibson ◽  
Robin Urquhart
Keyword(s):  
Study Protocol ◽  
Case Study Research ◽  
Case Analysis ◽  
Data Access ◽  
Health Data ◽  
Interview Data ◽  
Data Repositories ◽  
Factors Affecting ◽  
Administrative Health Data ◽  
Group 2

IntroductionIn Canada, most provinces have established administrative health data repositories to facilitate access to these data for research. Anecdotally, researchers have described delays and substantial inter-provincial variations in the timeliness of data access approvals and receipt of data. Currently, the reasons for these delays and variations in timeliness are not well understood. This paper provides a study protocol for (1) identifying the factors affecting access to administrative health data for research within select Canadian provinces, and (2) comparing factors across provinces to assess whether and how they contribute to inter-provincial variations in access to administrative health data for research. MethodsA qualitative, multiple-case study research design will be used. Three cases will be included, representing three different provinces. For each case, data will be collected from documents and interviews. Specifically, interviews will be carried out with (1) research stakeholders, and (2) regulatory stakeholders (10 individuals/group*,2 groups/province * 3 provinces =$ 60). During within-case analysis, interview data for each stakeholder group will be analyzed separately using constant comparative analysis. Document analysis will occur iteratively, and will inform interview guide adaptation, and supplement interview data. Cross-case analysis will involve systematic comparison of findings across cases. DiscussionThis study represents the first in-depth examination of access to administrative health data in Canada. The main outcome will be an overarching mid-range theory explaining inter-provincial variations in access to administrative health data in Canada. This theory will be strengthened by the inclusion of the perspectives of both researchers and those involved in the regulation of data access. The findings from this study may be used to improve equitable and timely access to administrative health data across provinces, and may be transferable to other jurisdictions where barriers to access to administrative health data have been reported.

scholarly journals Challenges Associated with Cross-Jurisdictional Analyses using Administrative Health Data and Primary Care Electronic Medical Records in Canada

2018 ◽  
Vol 3 (3) ◽  
Author(s):  
Alan Katz ◽  
Jennifer Enns ◽  
Sabrina T Wong ◽  
Tyler Williamson ◽  
Alexander Singer ◽  
...  
Keyword(s):  
British Columbia ◽  
Social Services ◽  
Administrative Data ◽  
Data Access ◽  
Health Data ◽  
Quality Data ◽  
Data Governance ◽  
Quality Health Care ◽  
Data Repositories ◽  
Administrative Health Data

Over the last 30 years, public investments in Canada and many other countries have created clinical and administrative health data repositories to support research on health and social services, population health and health policy. However, there is limited capacity to share and use data across jurisdictional boundaries, in part because of inefficient and cumbersome procedures to access these data and gain approval for their use in research. A lack of harmonization among variables and indicators makes it difficult to compare research among jurisdictions. These challenges affect the quality, scope, and impact of work that could be done. The purpose of this paper is to compare and contrast the data access procedures in three Canadian jurisdictions (Manitoba, Alberta and British Columbia), and to describe how we addressed the challenges presented by differences in data governance and architecture in a Canadian cross-jurisdictional research study. We characterize common stages in gaining access to administrative data among jurisdictions, including obtaining ethics approval, applying for data access from data custodians, and ensuring the extracted data is released to accredited individuals in secure data environments. We identify advantages of Manitoba’s flexible ‘stewardship’ model over the more restrictive ‘custodianship’ model in British Columbia, and highlight the importance of communication between analysts in each jurisdiction to compensate for differences in coding variables and poor quality data. Researchers and system planners must have access to and be able to make effective use of administrative health data to ensure that Canadians continue to have access to high-quality health care and benefit from effective health policies. The considerable benefits of collaborative population-based research that spans jurisdictional borders have been recognized by the Canadian Institutes for Health Research in their recent call for the creation of a National Data Platform to resolve many of the issues in harmonization and validation of administrative data elements.

scholarly journals Multi-province epidemiological research using administrative data in Canada: Challenges and opportunities

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Amanda Butler ◽  
Mark Smith ◽  
Wayne Jones ◽  
Carol Adair ◽  
Simone Vigod ◽  
...  
Keyword(s):  
Health Care ◽  
Administrative Data ◽  
Data Access ◽  
Health Data ◽  
National Standards ◽  
Epidemiological Research ◽  
Data Infrastructure ◽  
Administrative Health Data ◽  
Challenges And Opportunities ◽  
Time Required

IntroductionCanada has a publicly-funded universal health care system with information systems managed by 13 provinces and territories. This context creates inconsistencies in data collection and challenges for epidemiological research conducted at the national or multi-jurisdictional level. Objectives and ApproachUsing a recent five-province research project as a case study (BC, AB, MB, ON, QC), we will discuss the strengths and challenges of using Canadian administrative health data in a multi-jurisdictional context. Our goal is to contribute to a better understanding of these challenges and the development of a more integrated and harmonized approach to conducting multi-jurisdictional research. ResultsMulti-jurisdictional data work is feasible but requires detailed coordination and extensive cooperation from all involved. There were noteable variations across provinces in this multi-province study. For example, time required to access the data varied greatly across the five provinces (from 4 to 9 months), and thus there were sequencing challenges, with some provinces being well into the analysis stage while others were still waiting for data. Access to human resources varied across provinces and in some cases led to delays in data abstraction. Cost of data (or analytic support) also varied across provinces, from $12,000 – $15,000. Critical to the success of the project was a coordinating group with expertise in both administrative health data and cross-provincial project coordination. Conclusion/ImplicationsThis project demonstrated the value of comparable data infrastructure with equitable access policies. Many of the disadvantages to multi-province projects using health care administrative data, such as potential coding errors and inconsistencies, can be managed by developing national standards and protocols, and tools that are shared for data cleaning and validation.

scholarly journals Using linked administrative health data for palliative and end of life care research in Ireland: potential and challenges

2021 ◽  
Vol 4 ◽  
pp. 17
Author(s):  
Maria Kelly ◽  
Katie O'Brien ◽  
Ailish Hannigan
Keyword(s):  
Palliative Care ◽  
Health System ◽  
End Of Life ◽  
Data Protection ◽  
End Of Life Care ◽  
Data Access ◽  
Health Data ◽  
Life Care ◽  
Administrative Health Data ◽  
Data Collections

Background: This study aims to examine the potential of currently available administrative health data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify administrative health data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) estimate  the impact of recent health system reforms and changes to data protection laws.  Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability and mechanisms for data access. Results: Eight datasets with potential for PEoLC research were identified, including four disease registries, (cancer, cystic fibrosis, motor neurone and interstitial lung disease), death certificate data, hospital episode data, community prescription data and one national survey. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data  use. Conclusions: With appropriate permissions, detailed knowledge of the datasets and good study design currently available administrative health data can be used for PEoLC research. Ongoing reform initiatives and recent changes to data privacy laws will facilitate future use of administrative health data for PEoLC research.

scholarly journals Detection of adverse drug events in e-prescribing and administrative health data: a validation study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Bettina Habib ◽  
Robyn Tamblyn ◽  
Nadyne Girard ◽  
Tewodros Eguale ◽  
Allen Huang
Keyword(s):  
Administrative Data ◽  
Gold Standard ◽  
Adverse Drug Events ◽  
Study Drug ◽  
Health Data ◽  
Diagnostic Code ◽  
Administrative Health Data ◽  
Potential Ades ◽  
Patient Reported

Abstract Background Administrative health data are increasingly used to detect adverse drug events (ADEs). However, the few studies evaluating diagnostic codes for ADE detection demonstrated low sensitivity, likely due to narrow code sets, physician under-recognition of ADEs, and underreporting in administrative data. The objective of this study was to determine if combining an expanded ICD code set in administrative data with e-prescribing data improves ADE detection. Methods We conducted a prospective cohort study among patients newly prescribed antidepressant or antihypertensive medication in primary care and followed for 2 months. Gold standard ADEs were defined as patient-reported symptoms adjudicated as medication-related by a clinical expert. Potential ADEs in administrative data were defined as physician, ED, or hospital visits during follow-up for known adverse effects of the study medication, as identified by ICD codes. Potential ADEs in e-prescribing data were defined as study drug discontinuations or dose changes made during follow-up for safety or effectiveness reasons. Results Of 688 study participants, 445 (64.7%) were female and mean age was 64.2 (SD 13.9). The study drug for 386 (56.1%) patients was an antihypertensive, and for 302 (43.9%) an antidepressant. Using the gold standard definition, 114 (16.6%) patients experienced an ADE, with 40 (10.4%) among antihypertensive users and 74 (24.5%) among antidepressant users. The sensitivity of the expanded ICD code set was 7.0%, of e-prescribing data 9.7%, and of the two combined 14.0%. Specificities were high (86.0–95.0%). The sensitivity of the combined approach increased to 25.8% when analysis was restricted to the 27% of patients who indicated having reported symptoms to a physician. Conclusion Combining an expanded diagnostic code set with e-prescribing data improves ADE detection. As few patients report symptoms to their physician, higher detection rates may be achieved by collecting patient-reported outcomes via emerging digital technologies such as patient portals and mHealth applications.

scholarly journals DERIVATION OF A MODEL THAT ACCURATELY PREDICTS CARDIOVASCULAR FROM NON-CARDIOVASCULAR CAUSE OF DEATH USING ADMINISTRATIVE HEALTH DATA SOURCES

2019 ◽  
Vol 35 (10) ◽  
pp. S17
Author(s):  
S. Patel ◽  
A. Khan ◽  
A. Sivaswamy ◽  
L. Ferreira-Legere ◽  
P. Austin ◽  
...  
Keyword(s):  
Cause Of Death ◽  
Health Data ◽  
Data Sources ◽  
Administrative Health Data

Alimentary factors affecting the formation of the nutritional status of school-age children

2021 ◽  
Vol 19 (3) ◽  
pp. 83-88
Author(s):  
O.V. Sazonova ◽  
◽  
L.I. Mazur ◽  
S.A. Pyrkova ◽  
M.Yu. Gavryushin ◽  
...  
Keyword(s):  
Nutritional Status ◽  
Fruits And Vegetables ◽  
Sixth Graders ◽  
School Age Children ◽  
School Age ◽  
School Meals ◽  
Factors Affecting ◽  
Confectionery Products ◽  
Group 3 ◽  
Group 2

Objective. To reveal the dependence of the alimentary factor’s influence on the formation of nutritional status disorders in organized groups of school-age children. Patients and methods. A sample questionnaire and an anthropometric survey of 488 school children aged 8–9 years (group 1), 12–13 years (group 2) and 16–17 years (group 3) were conducted. Nutritional status was analyzed by anthropometric measurements using regional modified regression scales for the Samara Region. The analysis of the results obtained, including the risk of nutritional status disorders, was performed with the use of parametric statistical procedures. Results. Hot school meals were provided to 85.6% of pupils in grades 2–3, to 55.6% of sixth graders and 36.4% of pupils in the senior classes. A rational diet was revealed in 18.3% of cases in the junior school group and only in 7.0% of cases in group 3. The consumption of bread and bakery products, vegetables, fruits, milk, and dairy products increases by high school age. The frequency of fish and seafood consumption in most cases in each age group is limited to a few meals per month. Anthropometric studies showed a significant increase in the proportion of children with nutritional status disorders (underweight or overweight) between the ages of 12 and 17. Conclusion. The risk of nutritional status disorders in the examined children was due to the high frequency of consumption of bakery and confectionery products, decreased consumption of fruits and vegetables, and infrequent meals. Key words: school meals, regimen, nutritional structure, nutritional status

Administrative health data: guilty until proven innocent

2017 ◽  
Vol 29 (1) ◽  
pp. 253-254 ◽  
Author(s):  
A. R. Levy ◽  
B. Sobolev
Keyword(s):  
Health Data ◽  
Administrative Health Data

scholarly journals General Public Views on Uses and Users of Administrative Health Data

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
P. Alison Paprica ◽  
Michael Schull
Keyword(s):  
Private Sector ◽  
General Public ◽  
Personal Data ◽  
Health Data ◽  
General Information ◽  
Privacy And Security ◽  
Administrative Health Data ◽  
Potential Benefits ◽  
Public Views ◽  
Linked Administrative Health Data

ABSTRACTObjectivesHigh profile initiatives and reports highlight the potential benefits that could be realized by increasing access to health data, but do members of the general public share this view? The objective was to gain insight into the general public’s attitudes toward users and uses of administrative health data. ApproachIn fall 2015, four professionally-moderated focus groups with a total of 31 Ontario participants were conducted; two in Thunder Bay, two in Toronto. Participants were asked to review and comment on: general information about research based on linked administrative health data, a case study and models through which various users might use administrative health data. ResultsSupport for research based on linked administrative health data was strongest when people agreed with the purposes for which studies were conducted. The main concerns related to the security of personal data generally (e.g., Canada Revenue Agency hacking incidents were noted) and potentially inappropriate uses of health data, particularly by the private sector (e.g., strong reservations about studies done solely or primarily with a profit motive). Participants were reassured when provided with information about the process for removing or coding identifying information from health data, and about the oversight provided by the Information and Privacy Commissioner of Ontario. However, even when fully informed of privacy and security safeguards, participants still felt that risks unavoidably increase when there are more people and organizations accessing data. ConclusionsMembers of general public were generally supportive of research based on linked administrative health data but with conditions, particularly when the possibility of private sector research was discussed. Notably, and citing security concerns, focus group participants preferred models that had a limited number of individuals or organizations accessing data.

scholarly journals Multi-province epidemiological research using linked administrative data: a case study from Canada.

2018 ◽  
Vol 3 (3) ◽  
Author(s):  
Amanda Leanne Butler ◽  
Mark Smith ◽  
Wayne Jones ◽  
Carol E Adair ◽  
Simone Vigod ◽  
...  
Keyword(s):  
Information Systems ◽  
Administrative Data ◽  
Research Process ◽  
Health Data ◽  
Provincial Government ◽  
Data Systems ◽  
Administrative Health Data ◽  
Healthcare Data ◽  
Research Activities

BackgroundCanada has a publicly-funded universal healthcare system with information systems managed by 13 different provinces and territories. This context creates inconsistencies in data collection and challenges for research or surveillance conducted at the national or multi-jurisdictional level. ObjectiveUsing a recent Canadian research project as a case study, we document the strengths and challenges of using administrative health data in a multi-jurisdictional context. We discuss the implications of using different health information systems and the solutions we adopted to deal with variations. Our goal is to contribute to better understanding of these challenges and the development of a more integrated and harmonized approach to conducting multi-jurisdictional research using administrative data. Context and ModelUsing data from five separate provincial healthcare data systems, we sought to create and report on a set of provincially-comparable mental health and addiction services performance indicators. In this paper, we document the research process, challenges, and solutions. Finally, we conclude by making recommendations for investment in national infrastructure that could help cut costs, broaden scope, and increase use of administrative health data that exists in Canada. ConclusionCanada has an incredible wealth of administrative data that resides in 13 territorial and provincial government systems. Navigating access and improving comparability across these systems has been an ongoing challenge for the past 20 years, but progress is being made. We believe that with some investment, a more harmonized and integrated information network could be developed that supports a broad range of surveillance and research activities with strong policy and program implications.

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