Sharing administrative health data with private industry: A report on two citizens' juries

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.

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Assessing the validity of administrative health data for the identification of children and youth with autism spectrum disorder in Ontario

Autism Research ◽

10.1002/aur.2491 ◽

2021 ◽

Author(s):

Jennifer D. Brooks ◽

Jasleen Arneja ◽

Longdi Fu ◽

Farah E. Saxena ◽

Karen Tu ◽

...

Keyword(s):

Autism Spectrum Disorder ◽

Autism Spectrum ◽

Health Data ◽

Spectrum Disorder ◽

Children And Youth ◽

Administrative Health Data

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

Canadian Journal of Cardiology ◽

10.1016/j.cjca.2019.07.077 ◽

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

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Administrative health data: guilty until proven innocent

Osteoporosis International ◽

10.1007/s00198-017-4243-5 ◽

2017 ◽

Vol 29 (1) ◽

pp. 253-254 ◽

Cited By ~ 1

Author(s):

A. R. Levy ◽

B. Sobolev

Keyword(s):

Health Data ◽

Administrative Health Data

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General Public Views on Uses and Users of Administrative Health Data

International Journal for Population Data Science ◽

10.23889/ijpds.v1i1.47 ◽

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.

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

International Journal for Population Data Science ◽

10.23889/ijpds.v3i3.443 ◽

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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Community Attitudes Towards Sharing Government Health Data with Private Companies: A Scoping Review

International Journal for Population Data Science ◽

10.23889/ijpds.v5i5.1531 ◽

2020 ◽

Vol 5 (5) ◽

Author(s):

Jackie Street ◽

Belinda Fabrianesi ◽

Rebecca Bosward ◽

Stacy Carter ◽

Annette Braunack-Mayer

Keyword(s):

Data Sharing ◽

Health Care Providers ◽

Scoping Review ◽

Public Attitudes ◽

Health Data ◽

Public Confidence ◽

Care Providers ◽

Private Industry ◽

Good Communication ◽

Government Health

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious. Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers. ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant’s own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents. Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.

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