Literature DB >> 22935136

Privacy by Design at Population Data BC: a case study describing the technical, administrative, and physical controls for privacy-sensitive secondary use of personal information for research in the public interest.

Caitlin Pencarrick Hertzman1, Nancy Meagher, Kimberlyn M McGrail.   

Abstract

Population Data BC (PopData) is an innovative leader in facilitating access to linked data for population health research. Researchers from academic institutions across Canada work with PopData to submit data access requests for projects involving linked administrative data, with or without their own researcher-collected data. PopData and its predecessor-the British Columbia Linked Health Database-have facilitated over 350 research projects analyzing a broad spectrum of population health issues. PopData embeds privacy in every aspect of its operations. This case study focuses on how implementing the Privacy by Design model protects privacy while supporting access to individual-level data for research in the public interest. It explores challenges presented by legislation, stewardship, and public perception and demonstrates how PopData achieves both operational efficiencies and due diligence.

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Year:  2012        PMID: 22935136      PMCID: PMC3555322          DOI: 10.1136/amiajnl-2012-001011

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   4.497


  10 in total

1.  Research use of linked health data--a best practice protocol.

Authors:  C W Kelman; A J Bass; C D J Holman
Journal:  Aust N Z J Public Health       Date:  2002       Impact factor: 2.939

2.  Registry research and medical privacy.

Authors:  Julie R Ingelfinger; Jeffrey M Drazen
Journal:  N Engl J Med       Date:  2004-04-01       Impact factor: 91.245

Review 3.  Administrative record linkage as a tool for public health research.

Authors:  Douglas P Jutte; Leslie L Roos; Marni D Brownell
Journal:  Annu Rev Public Health       Date:  2011       Impact factor: 21.981

4.  Health data linkage conserves privacy in a research-rich environment.

Authors:  Brooke Trutwein; C D'Arcy J Holman; Diana L Rosman
Journal:  Ann Epidemiol       Date:  2005-10-27       Impact factor: 3.797

5.  A decade of data linkage in Western Australia: strategic design, applications and benefits of the WA data linkage system.

Authors:  C D'Arcy J Holman; A John Bass; Diana L Rosman; Merran B Smith; James B Semmens; Emma J Glasson; Emma L Brook; Brooke Trutwein; Ian L Rouse; Charles R Watson; Nicholas H de Klerk; Fiona J Stanley
Journal:  Aust Health Rev       Date:  2008-11       Impact factor: 1.990

6.  Privacy versus public health: the impact of current confidentiality rules.

Authors:  Daniel Wartenberg; W Douglas Thompson
Journal:  Am J Public Health       Date:  2010-01-14       Impact factor: 9.308

7.  Remote access methods for exploratory data analysis and statistical modelling: Privacy-Preserving Analytics.

Authors:  Ross Sparks; Chris Carter; John B Donnelly; Christine M O'Keefe; Jodie Duncan; Tim Keighley; Damien McAullay
Journal:  Comput Methods Programs Biomed       Date:  2008-05-20       Impact factor: 5.428

8.  The effect of privacy legislation on observational research.

Authors:  Andrea S Gershon; Jack V Tu
Journal:  CMAJ       Date:  2008-03-25       Impact factor: 8.262

9.  Creating a population-based linked health database: a new resource for health services research.

Authors:  R Chamberlayne; B Green; M L Barer; C Hertzman; W J Lawrence; S B Sheps
Journal:  Can J Public Health       Date:  1998 Jul-Aug

10.  From health research to social research: privacy, methods, approaches.

Authors:  Leslie L Roos; Marni Brownell; Lisa Lix; Noralou P Roos; Randy Walld; Leonard MacWilliam
Journal:  Soc Sci Med       Date:  2007-10-04       Impact factor: 4.634

  10 in total
  17 in total

1.  Linking Canadian population health data: maximizing the potential of cohort and administrative data.

Authors:  Dany Doiron; Parminder Raina; Isabel Fortier
Journal:  Can J Public Health       Date:  2013-03-06

2.  Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders.

Authors:  Katherine K Kim; Dennis K Browe; Holly C Logan; Roberta Holm; Lori Hack; Lucila Ohno-Machado
Journal:  J Am Med Inform Assoc       Date:  2013-12-03       Impact factor: 4.497

Review 3.  Privacy preserving interactive record linkage (PPIRL).

Authors:  Hye-Chung Kum; Ashok Krishnamurthy; Ashwin Machanavajjhala; Michael K Reiter; Stanley Ahalt
Journal:  J Am Med Inform Assoc       Date:  2013-11-07       Impact factor: 4.497

4.  Design and Implementation of a Secure Computing Environment for Analysis of Sensitive Data at an Academic Medical Center.

Authors:  Peter R Oxley; John Ruffing; Thomas R Campion; Terrie R Wheeler; Curtis L Cole
Journal:  AMIA Annu Symp Proc       Date:  2018-12-05

5.  Biomedical data privacy: problems, perspectives, and recent advances.

Authors:  Bradley A Malin; Khaled El Emam; Christine M O'Keefe
Journal:  J Am Med Inform Assoc       Date:  2012-12-06       Impact factor: 4.497

6.  Physician Financial Incentives to Reduce Unplanned Hospital Readmissions: an Interrupted Time Series Analysis.

Authors:  John A Staples; Guiping Liu; Jeffrey R Brubacher; Ahmer Karimuddin; Jason M Sutherland
Journal:  J Gen Intern Med       Date:  2021-05-04       Impact factor: 5.128

7.  Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada.

Authors:  Jack Teng; Colene Bentley; Michael M Burgess; Kieran C O'Doherty; Kimberlyn M McGrail
Journal:  Int J Popul Data Sci       Date:  2019-05-07

8.  A case study of the Secure Anonymous Information Linkage (SAIL) Gateway: a privacy-protecting remote access system for health-related research and evaluation.

Authors:  Kerina H Jones; David V Ford; Chris Jones; Rohan Dsilva; Simon Thompson; Caroline J Brooks; Martin L Heaven; Daniel S Thayer; Cynthia L McNerney; Ronan A Lyons
Journal:  J Biomed Inform       Date:  2014-01-15       Impact factor: 6.317

9.  Preparing linked population data for research: cohort study of prisoner perinatal health outcomes.

Authors:  Lisa Hilder; Jane R Walker; Michael H Levy; Elizabeth A Sullivan
Journal:  BMC Med Res Methodol       Date:  2016-06-16       Impact factor: 4.615

10.  Using Distributed Data over HBase in Big Data Analytics Platform for Clinical Services.

Authors:  Dillon Chrimes; Hamid Zamani
Journal:  Comput Math Methods Med       Date:  2017-12-11       Impact factor: 2.238

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