Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: May 6, 2022
Date Accepted: Jul 18, 2022
Needle in a Haystack: A Systematic Assessment of Publicly Available Resources Addressing Legal Data Sharing Barriers
ABSTRACT
Background:
United States data protection laws vary depending on the data type and its context. Data projects involving social determinants of health often concern different data protection laws making it difficult to navigate.
Objective:
We have systematically aggregated and assessed useful online resources that may help navigate the data sharing landscape.
Methods:
We included publicly available resources that discussed legal data sharing issues with some health relevance and published between 2010-2019. We conducted an iterative search with a common string pattern using a general-purpose search engine that targeted 24 different sectors identified by Data Across Sectors for Health. We scored each online resource for their depth of legal and data sharing discussions, and value for addressing legal barriers.
Results:
Out of 3710 total search hits, 2721 unique URLs were reviewed for scope, 322 received full-text review, and 154 were selected for final coding. Legal agreements, consent and agency guidance were the most widely covered legal topics, with HIPAA, FERPA and 42 CFR Part 2 being the top-three federal laws discussed. Clinical healthcare was the most prominent sector with a mention in 73 resources.
Conclusions:
This is the first systematic study of publicly available resources on legal data sharing issues. We found existing gaps where a lack of existing resources covering certain laws or applications creates uncertainty for practitioners. The volume of resources we found is an indicator that real and perceived legal issues are a substantial barrier to efforts to leverage data from different sectors to promote health.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.