NB Health Care

Monday
November 24
2014

Jake Kendall

NexThought Monday – Unlocking Mobile Data: Regulatory and privacy issues prevent metadata use from realizing its full potential

This blog is co-authored by Yves-Alexandre de Montjoye, a Ph.D. candidate at the Massachusetts Institute of Technology Media Lab, and Cameron Kerry, a visiting fellow at the Brookings Institution, a visiting scholar at the MIT Media Lab, senior counsel at Sidley Austin LLP, and former general counsel and acting secretary of the United States Department of Commerce.

The Ebola outbreak in West Africa has put a spotlight on the potential for data to help in understanding the spread of disease using mobile phone records. African countries are not data-rich environments but, for every 100 inhabitants, there are 89 mobile phones. The metadata in call detail records maintained by mobile phone operators – who called whom, at what time and from where – offers a rich source of data that can be used to track, among other things, importation routes for infectious disease, patterns of migration or economic transactions. But efforts to share this data in the fight against Ebola have run into roadblocks.

A Brookings paper we co-authored looks at some of the obstacles. Our work was part of a working group of the Big Data@MIT initiative looking at various cases of “big data” use to consider the privacy issues involved and how technology and other tools could address them.

We examined two use cases of mobile phone data for development of two scenarios that are quite distinct from a regulatory and privacy perspective. One, modeled on previous research, involved the use of location metadata to model the spread of infectious diseases (e.g. malaria or Ebola) within and among countries. The second case considered the use of mobile phone data to define subgroups based on specific traits and behaviors, and then micro-target outreach for interventions. We also considered limited circumstances where the data might be used to select specific individuals to be identified and contacted directly in case of emergency.

These mobile phone data case studies revealed ways in which, despite the promise, regulatory barriers and privacy challenges are preventing the use of mobile phone metadata from realizing its full potential. More specifically, our analysis showed (1) the lack of commonly-accepted practices for sharing mobile phone data in privacy-conscientious ways and (2) an uncertain and country-specific regulatory landscape for data-sharing, especially for cross-border data sharing.

The devil is in the details here and our research found almost no documentation or guidance that dives in past high-level principles which do not give policymakers or mobile carriers enough clarity. Thus, one of the things we do in our paper is make some concrete suggestions on exactly how data should be anonymized for various contexts. We are considering a follow-on piece that will go even deeper into the nuts and bolts of an expanded version of the framework.

Our article makes several broad recommendations, as well, to facilitate the use of mobile phone metadata for humanitarian purposes like Ebola in ways that will protect against the misuse of information:

1. There is a clear need for companies, NGOs, researchers, privacy experts and governments to agree on a set of best practices for new privacy-conscientious metadata sharing models in different development use cases – a wider and higher-level discussion of the kind our MIT working group conducted. Such best practices would help carriers and policymakers strike the right balance between privacy and utility in the use of metadata, and make it easier and less risky for carriers to support humanitarian and research uses, and for researchers and NGOs to use metadata appropriately.

2. Such best practices should accept that there are no perfect ways to de-identify data – and probably never will be. 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.

3. Standards and practices as well as legal regulation also need to address and incorporate trust mechanisms for humanitarian sharing of data in a more nuanced way. The recognition of trusted third parties and systems to manage datasets, enable detailed audits and control the use of data could enable greater sharing of these data among multiple parties while providing a barrier against risks.

4. There is a need for governments to focus on adopting laws and rules that simplify the collection and use of mobile phone metadata for research and public good purposes. Governments should also seek to harmonize laws on the sharing of metadata with common identifiers across national borders. Clear and consistent rules will help but only provided they take a pragmatic and privacy-conscientious approach to anonymization, cross-border transfers and novel uses that enable public good uses of data and allow for public health emergencies and other valuable research.

Research based on mobile phone data, computational privacy and data protection rules all may seem secondary when confronted by the challenges of poverty, disease and basic economic growth. But they are on the critical path to realizing the great potential of information technology to help address these critical problems.

Jake Kendall is initiative lead, research and innovation, in the Financial Services for the Poor initiative at the Bill & Melinda Gates Foundation. The statements and opinions in this document are the author’s alone and in no way reflect the opinions, strategy or views of the Bill & Melinda Gates Foundation.

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Health Care, Technology
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Bill & Melinda Gates Foundation, global health, healthcare technology, infectious diseases, mobile phones, NexThought Monday, public health