Privacy, regulatory concerns top hurdles facing humanitarian mHealth data use

The top hurdles thwarting use of mobile data for humanitarian use, such as tracking disease outbreaks, are worries about user privacy and a confusing patchwork of regulations, according to new research from The Center for Technology Innovation at Brookings.

"These privacy challenges and regulatory barriers are making humanitarian data-sharing much harder than it should be for mobile phone operators and are significantly limiting greater use of mobile phone metadata in development or aid programs and in research areas like ... public health," according to the study's authors.

The report, "Enabling Humanitarian Use of Mobile Phone Data," recommends several actions, including updating the privacy regulations proposed by the European Commission two years ago to include use for scientific research; creating a set of best practices for new privacy-focused metadata sharing models to a strike balance between privacy and data use; and urging governments to adopt laws that simplify mobile phone metadata collection and use when it's for public good purposes.

Such concerns are what prompted federal officials to begin discussions with Apple over its impending HealthKit platform which will rely on data collection and use for providing users insight on healthcare issues, according to a Reuters report, which stated the Federal Trade Commission and Apple have met several times regarding data use and user consent when it comes to selling data.

Data use worries also recently prompted a lawmaker to call on the FTC to investigate potential new rules about data protection given a report that health information collected by devices is are already being sold and shared with third-parties.

Best practices, notes the Brookings report, would make it easier and less risky for mobile carriers to support humanitarian and research use of metadata for researchers.

"There will always be some risk that must be balanced against the public good that can be achieved. While much more research is needed in computational privacy, widespread adoption of existing techniques as standards could enable this trend of sharing data in a privacy-conscientious way," the report's authors write. They also say research based on mobile phone data as critical for eradicating poverty, curing disease and promoting economic growth worldwide.

With regard to mobile data regulations, the report notes there must be unification and collaboration between countries.

"Governments should also seek to harmonize laws on the sharing of metadata with common identifiers across national borders," the report says.

For more information:
- read the Brookings report (.pdf)
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