About this Issue

Healthcare technologies are rapidly evolving, producing new data types and innovative data uses. Data and technology can bring significant enhancements to the healthcare system, deepen patients’ and consumers’ engagement, and help to improve health outcomes. It is critical to analyze how sensitive health and wellness data affects individual privacy and understand what it means for doctors, researchers, and companies to responsibly use such data.

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Building on FPF’s previous work regarding Consumer Wearables and Wellness Apps and Devices, FPF is exploring issues at the intersection of health, data, and privacy. Of main focus are the privacy challenges related to the collection, use, and sharing of both medical data and data that falls outside of HIPAA regulation, i.e. health and wellness data. FPF brings together stakeholders to analyze how new technologies and data practices in the health ecosystem can impact individual privacy and promote the more effective and ethical use of data.

Highlights Include:

  • FPF sponsored the Refining Privacy to Improve Health Outcomes Symposium on October 26-27, 2017 in Durham, NC. The event — also sponsored by Intel Corporation, Information Accountability Foundation (IAF), Center for Democracy (CDT), University North Carolina at Chapel Hill, and Duke University, Triangle Privacy Research Hub — brought together leading experts in the fields of privacy, medicine, and data science to discuss how new technologies and data sources can improve health outcomes, while protecting individual privacy. The goal of the event was to propose specific law, policy, and practice changes to promote the more effective use of data for health research.
  • FPF convened a Genetic Working Group, which consists of leading direct-to-consumer (DTC) genetics companies, to develop Privacy Principles for Genetic Data. These Principles provide a privacy policy framework for the collection, protection, sharing, and use of genetic data.
  • FPF is developing a White Paper with Privacy Analytics, an IQVIA company, regarding the re-identification challenges currently facing genetic data. The paper identities potential re-identification risks, highlights new technologies that could help mitigate such challenges, and outlines a practical path forward.
  • FPF has partnered with the Information Accountability Foundation (IAF) to form the FPF-IAF Joint Health Initiative to better understand the health data ecosystem by mapping the stakeholders in the field and the data flows between them, as well as creating a common language and taxonomy for data types. This project is maping novel data use cases and identifying opportunities and challenges to responsible and beneficial uses of data in health.
  • FPF is working with stakeholders to explore the promise and privacy implications of internet of things devices used by persons with disabilities. An FPF white paper will document the range of areas where data and technology offer benefits to persons with disabilities, how the disability community may have different views of how data and technology may be used to support their needs and goals, and circumstances in which disabled users may need enhanced or alternative privacy protections.

Working Group Meetings

Health Working Group meetings are generally held once per month. FPF members are welcome to join these discussions. If you would like call-in information (or to be added to the working group), please contact Carson Martinez at [email protected].

Mobile Apps Study Underscores Necessity of Strong Best Practices for Health and Wellness Data
Spotlight

January 17, 2017 | Melanie E. Bates

Mobile Apps Study Underscores Necessity of Strong Best Practices for Health and Wellness Data

Kelsey Finch, FPF Policy Counsel, presented FPF’s 2016 Mobile Apps Study at the Federal Trade Commission’s annual PrivacyCon on January 12, 2017. Kelsey presented a visual representation of the App Study designed by FPF Fellow, Carolina Alonso. See the visual.

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What's Happening: Health

Future of Privacy Forum Releases Best Practices for Consumer Wearables and Wellness Apps and Devices
Top Story

August 17, 2016 | Melanie E. Bates

Future of Privacy Forum Releases Best Practices for Consumer Wearables and Wellness Apps and Devices

Washington, DC – Today, the Future of Privacy Forum (FPF) released Best Practices for Consumer Wearables and Wellness Apps and Devices, a detailed set of guidelines that responsible companies can follow to ensure they provide practical privacy protections for consumer-generated health and wellness data. The document was produced with support from the Robert Wood Johnson Foundation and incorporates input from a wide range of stakeholders including companies, advocates, and regulators.

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W&L Law Offers DC-based Cyber Law and Privacy Seminar with Future of Privacy Forum
Top Story

May 27, 2016 | Melanie E. Bates

W&L Law Offers DC-based Cyber Law and Privacy Seminar with Future of Privacy Forum

The course, titled “Cyber Policy and Privacy Law,” will be co-taught by Professor Margaret Hu and Jules Polonetsky, CEO at FPF. The course will examine how the expanding role of the internet, big data, e-commerce, social media, and wearable technology has strained the preexisting regulatory and constitutional frameworks that have guided privacy protections under the law.

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CEA releases guiding privacy & security principles for wearable technologies
Top Story

October 27, 2015 | FPF Staff

CEA releases guiding privacy & security principles for wearable technologies

Yesterday, October 26th, the Consumer Electronics Association (CEA) announced voluntary guidelines for organizations that manage personal and health-related data, particularly as generated by consumer wearable technologies. This step illustrates CEA’s attempt to promote consumer trust in technology companies producing and supporting health trackers and other wearable technologies.

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