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Permanent link (DOI): https://doi.org/10.7939/R3H70837Z

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Challenges created by data dissemination and access restrictions when attempting to address community concerns: individual privacy versus public wellbeing. Open Access

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Author or creator
Colquhoun, A.
Aplin, L.
Geary, J.
Goodman, K.J.
Hatcher, J.
Additional contributors
Subject/Keyword
Helicobacter pylori
Aboriginal health
confidentiality
circumpolar regions
cancer
Canada
Type of item
Journal Article (Published)
Language
English
Place
Time
Description
Background: Population health data are vital for the identification of public health problems and the development of public health strategies. Challenges arise when attempts are made to disseminate or access anonymised data that are deemed to be potentially identifiable. In these situations, there is debate about whether the protection of an individual’s privacy outweighs potentially beneficial public health initiatives developed using potentially identifiable information.While these issues have an impact at planning and policy levels, they pose a particular dilemma when attempting to examine and address community concerns about a specific health problem. Methods: Research currently underway in northern Canadian communities on the frequency of Helicobacter pylori infection and associated diseases, such as stomach cancer, is used in this article to illustrate the challenges that data controls create on the ability of researchers and health officials to address community concerns. Results: Barriers are faced by public health professionals and researchers when endeavouring to address community concerns; specifically, provincial cancer surveillance departments and community-driven participatory research groups face challenges related to data release or access that inhibit their ability to effectively address community enquiries. The resulting consequences include a limited ability to address misinformation or to alleviate concerns when dealing with health problems in small communities. Conclusions: The development of communication tools and building of trusting relationships are essential components of a successful investigation into community health concerns. It may also be important to consider that public wellbeing may outweigh the value of individual privacy in these situations. As such, a re-evaluation of data disclosure policies that are applicable in these circumstances should be considered.
Date created
2012
DOI
doi:10.7939/R3H70837Z
License information
Creative Commons Attribution-Non-Commercial 3.0 Unported
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Citation for previous publication
Colquhoun A, Aplin L, Geary J, Goodman KJ, and Hatcher J. Challenges created by data dissemination and access restrictions when attempting to address community concerns: individual privacy versus public wellbeing. International Journal of Circumpolar Health. 2012; 71:1-7.
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