CC BY-NC-ND 4.0 · Yearb Med Inform 2020; 29(01): 032-043
DOI: 10.1055/s-0040-1701987
Special Section: Ethics in Health Informatics
Survey
Georg Thieme Verlag KG Stuttgart

Developments in Privacy and Data Ownership in Mobile Health Technologies, 2016-2019

Hannah K. Galvin
1  Cambridge Health Alliance, Cambridge, MA, USA
2  Tufts University School of Medicine, Boston, MA, USA
,
Paul R. DeMuro
3  Chief Legal Officer Health and Wellness, Royal Palm Companies, Miami, Florida
› Author Affiliations
Further Information

Publication History

Publication Date:
21 August 2020 (online)

Summary

Objectives: To survey international regulatory frameworks that serve to protect privacy of personal data as a human right as well as to review the literature regarding privacy protections and data ownership in mobile health (mHealth) technologies between January 1, 2016 and June 1, 2019 in order to identify common themes.

Methods: We performed a review of relevant literature available in English published between January 1, 2016 and June 1, 2019 from databases including PubMed, Google Scholar, and Web of Science, as well as relevant legislative background material. Articles out of scope (as detailed below) were eliminated. We categorized the remaining pool of articles and discrete themes were identified, specifically: concerns around data transmission and storage, including data ownership and the ability to re-identify previously de-identified data; issues with user consent (including the availability of appropriate privacy policies) and access control; and the changing culture and variable global attitudes toward privacy of health data.

Results: Recent literature demonstrates that the security of mHealth data storage and transmission remains of wide concern, and aggregated data that were previously considered “de-identified” have now been demonstrated to be re-identifiable. Consumer-informed consent may be lacking with regard to mHealth applications due to the absence of a privacy policy and/or to text that is too complex and lengthy for most users to comprehend. The literature surveyed emphasizes improved access control strategies. This survey also illustrates a wide variety of global user perceptions regarding health data privacy.

Conclusion: The international regulatory framework that serves to protect privacy of personal data as a human right is diverse. Given the challenges legislators face to keep up with rapidly advancing technology, we introduce the concept of a “healthcare fiduciary” to serve the best interest of data subjects in the current environment.

Supplementary Material