Literature DB >> 19305716

Data protection and the promotion of health research: if the laws are not the problem, then what is?

Donald J Willison1.   

Abstract

Data protection laws offer such broad exemptions for research that research ethics boards and data custodians lack sufficient guidance as to when it may be acceptable to release data to researchers without consent. The result: idiosyncratic institutional policies that create major challenges for researchers conducting multi-centred studies. The 2005 CIHR Best Practices for Protecting Privacy in Health Research provide an important first step towards greater clarity. However, there is still a need to translate these Best Practices into harmonized policies. This should be seen as an opportunity rather than a threat. Clear rules for data protection will reinforce public trust, which is essential for continued access to personal information for research.

Year:  2007        PMID: 19305716      PMCID: PMC2585460     

Source DB:  PubMed          Journal:  Healthc Policy        ISSN: 1715-6572


  3 in total

Review 1.  Weaving technology and policy together to maintain confidentiality.

Authors:  L Sweeney
Journal:  J Law Med Ethics       Date:  1997 Summer-Fall       Impact factor: 1.718

2.  Privacy and the secondary use of data for health research: experience in Canada and suggested directions forward.

Authors:  Donald Willison
Journal:  J Health Serv Res Policy       Date:  2003-07

3.  DNA databanks and consent: a suggested policy option involving an authorization model.

Authors:  Timothy Caulfield; Ross E G Upshur; Abdallah Daar
Journal:  BMC Med Ethics       Date:  2003-01-03       Impact factor: 2.652

  3 in total
  5 in total

1.  Meeting the privacy requirements for the development of a multi-centre patient registry in Canada: the Rick Hansen Spinal Cord Injury Registry.

Authors:  Vanessa K Noonan; Nancy P Thorogood; Phalgun B Joshi; Michael G Fehlings; B Catharine Craven; Gary Linassi; Daryl R Fourney; Brian K Kwon; Christopher S Bailey; Eve C Tsai; Brian M Drew; Henry Ahn; Deborah Tsui; Marcel F Dvorak
Journal:  Healthc Policy       Date:  2013-05

2.  Understanding identifiability in secondary health data.

Authors:  Niko Yiannakoulias
Journal:  Can J Public Health       Date:  2011 Jul-Aug

3.  Reducing barriers to accessing administrative data on SARS-CoV-2 vaccination for research.

Authors:  Andrew D McRae; Patrick Archambault; Patrick Fok; Hana Wiemer; Laurie J Morrison; Matthew Herder
Journal:  CMAJ       Date:  2022-07-18       Impact factor: 16.859

4.  Sharing medical data for health research: the early personal health record experience.

Authors:  Elissa R Weitzman; Liljana Kaci; Kenneth D Mandl
Journal:  J Med Internet Res       Date:  2010-05-25       Impact factor: 5.428

5.  Lessons Learned: It Takes a Village to Understand Inter-Sectoral Care Using Administrative Data across Jurisdictions.

Authors:  Patti Ann Groome; Mary L McBride; Li Jiang; Cynthia Kendell; Kathleen M Decker; Eva Grunfeld; Monika K Krzyzanowska; Marcy Winget
Journal:  Int J Popul Data Sci       Date:  2018-11-12
  5 in total

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