scholarly journals Social licence and the general public’s attitudes toward research based on linked administrative health data: a qualitative study

CMAJ Open ◽  
2019 ◽  
Vol 7 (1) ◽  
pp. E40-E46 ◽  
Author(s):  
P. Alison Paprica ◽  
Magda Nunes de Melo ◽  
Michael J. Schull
Keyword(s):  
Qualitative Study ◽  
Health Data ◽  
Administrative Health Data ◽  
Linked 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 Qualitative Study of Physician Perspectives on Classifying Screening and Nonscreening Colonoscopy using Administrative Health Data: Adding Practice Does Not Make Perfect

2012 ◽  
Vol 26 (12) ◽  
pp. 889-893 ◽  
Author(s):  
Maida J Sewitch ◽  
Robert Hilsden ◽  
Lawrence Joseph ◽  
Linda Rabeneck ◽  
Lawrence Paszat ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Risk Factors ◽  
Focus Group ◽  
Qualitative Study ◽  
Cancer Risk ◽  
Family Physicians ◽  
Health Data ◽  
Screening Colonoscopy ◽  
Cancer Risk Factors ◽  
Administrative Health Data

BACKGROUND: Previously developed screening colonoscopy algorithms based on diagnostic and endoscopy procedural variables have not been sufficiently accurate for use in epidemiological and health services research.OBJECTIVE: To increase understanding of the administrative health database variables that could help to discern screening and nonscreening colonoscopy.METHODS: A qualitative study using physician focus groups was conducted in Montreal (Quebec), Calgary (Alberta) and Toronto (Ontario). Specialty-specific focus group sessions were held among family physicians and gastroenterologists – the physicians responsible for referring patients to and performing screening colonoscopy, respectively. Interview guides were developed to better understand physician clinical and billing practices. Discussions were audiotaped, transcribed verbatim and analyzed using the constant comparative approach.RESULTS: Forty family physicians and seven gastroenterologists participated in five focus group sessions. Patient variables included demographics (age) and medical history (colorectal cancer risk factors/symptoms, medication for colorectal cancer risk factors/symptoms, gastrointestinal disorders, severe disease). Clinical practice variables included timing of the colonoscopy (evenings, weekends, holidays, during hospitalization; same-day endoscopist consultation and colonoscopy), use of services (hospitalization, annual examination, transfer from other facility) and procedure use patterns (large bowel or other medical/surgical procedure before and subsequent to colonoscopy). However, wide variability in clinical and billing practices will likely preclude the development of a reasonably accurate screening colonoscopy algorithm. Physicians suggested adding a screening colonoscopy code to the administrative health data.CONCLUSIONS: Failure to acknowledge the limitations of the provincial administrative health databases to identify screening colonoscopy may lead to incorrect conclusions and the establishment of inappropriate health care policies.

scholarly journals Answering questions posed by health system stakeholders using linked administrative health data at the Institute for Clinical Evaluative Sciences (ICES)

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Erika A. Yates ◽  
Marian J. Vermeulen ◽  
Refik Saskin ◽  
Charles J. Victor ◽  
Alison P. Paprica ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Health System ◽  
Health Care Providers ◽  
Health Data ◽  
Fiscal Year ◽  
Care Providers ◽  
Administrative Health Data ◽  
Research Findings ◽  
Linked Administrative Health Data

ABSTRACTObjectivesThere is a growing need to broaden access to administrative health data in order to support decision making and planning by health system stakeholders. An initiative funded by the Ontario Ministry of Health and Long-Term Care, the Applied Health Research Question (AHRQ) portfolio leverages the linked administrative health data holdings and the scientific and clinical expertise at ICES to answer questions generated by stakeholders that will have a direct impact on health care policy, planning or practice. ApproachEligible requesters include government ministries, health care providers and planners. Requests detail the purpose of the research question, the related scientific literature, and the planned use and intended impact of the research findings. An internal review team meets monthly to adjudicate; requests demonstrably needing research findings rapidly are adjudicated on an ad hoc basis. Eligible requests are those that aim to inform evidence-based decision making, do not advocate for a particular answer and are feasible in terms of data availability. All projects are reviewed by the internal privacy office to ensure that use of the administrative health data is in accordance with both data sharing agreements and legislation governing use of personal health information. At no cost to the requesting organization, ICES scientists and research staff formulate the analysis plan, conduct the analysis and prepare the research product (data tables, a slide deck and/or a written report); and, may opt to publish noteworthy findings. All research products must be cleared for risk of re-identification prior to being shared externally. ResultsRequests have steadily increased from 43 submissions in fiscal year 2012/13, to 59 in 2014/15 and 74 to date in 2015/16. In fiscal year 2014/15, provincial government and government agencies were the most frequent requesters (39%), followed by hospitals and other health care providers (19%), disease advocacy groups (12%) and professional associations (10%). Requests include assessment of health care utilization; health system performance and evaluation; and chronic disease prevalence and treatment. Time to complete reports varies from 5 days to 24 months, depending on project complexity and requirements. Requesters report that AHRQ research findings have influenced decision-making, policy development and health care practice; and have inspired future research. ConclusionThis initiative demonstrates the value and feasibility of using the linked administrative health data to answer questions to meet the unique needs of health planners and policymakers, and presents an opportunity for collaboration beyond the academic research community.

scholarly journals High-dimensional propensity score adjustment in HIV research using linked administrative health data

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Taylor McLinden ◽  
Rolando Barrios ◽  
Robert Hogg
Keyword(s):  
Propensity Score ◽  
Administrative Data ◽  
Population Data ◽  
Population Based ◽  
Health Data ◽  
High Dimensional ◽  
People Living With Hiv ◽  
Administrative Health Data ◽  
Hiv Research ◽  
Linked Administrative Health Data

BackgroundDespite not being collected for research purposes, linked administrative health data are increasingly being used to conduct observational epidemiologic analyses. In the field of HIV research in British Columbia (BC), Canada, the Comparative Outcomes And Service Utilization Trends (COAST) Study is based on a linkage between HIV-related clinical data and several provincial administrative health datasets. Specifically, the BC Centre for Excellence in HIV/AIDS Drug Treatment Program, which manages antiretroviral therapy (ART) dispensation for all known people living with HIV (PLWH) in BC, is linked with several Population Data BC data holdings. Population Data BC is a repository that houses longitudinal administrative data for all BC residents. RationaleWhile the use of administrative data for research poses several challenges, bias due to confounding remains to be a key issue in this context. While randomized controlled trials of ART are common, an objective of COAST is to further examine the "real-world" impact of ART on health and clinical outcomes in a population-based sample of 13,907 PLWH in BC. Therefore, while longitudinal administrative data provide a unique opportunity to estimate the effect of ART on outcomes that are infrequently assessed in trials (e.g., chronic conditions), such data often lacks information on sociodemographic, socioeconomic, and behavioural confounders. ApproachIt has been shown that adjustment for large numbers of covariates, in the form of administrative codes (e.g., diagnostic ICD codes, procedure codes, drug identification numbers), allows for better control of confounding bias. Therefore, relying on an established methodology in pharmacoepidemiology, we will use the high-dimensional propensity score algorithm to select and prioritize covariates (codes) that collectively act as proxies for unmeasured confounders. The use of this causal inference methodology in COAST will enhance our ability to generate stronger evidence to inform strategies that may improve the health and wellbeing of PLWH in this setting.

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