Medical privacy

• Data held by companies is often essential for research, so we develop best practices for access to corporate data and ethical review structures to provide oversight.
• Machine learning techniques can raise issues of research transparency and fairness and bias, so we work on methods to identify and counter bias. 
• De-identification can reduce the risks involved with research, so we work to advance de-identification that supports the utility of data. 
• We work with policymakers to develop legislative protections that support research with strong safeguards.
• We work to ensure access and protections for cross border data flows for research. 

• When corporations open their data stores and responsibly share this data with university researchers, they can support progress in medicine, public health, education, social sciences, computer science, and many other fields.
• The Best Practices for Sharing Data with Academic Researchers were developed by the FPF Corporate Academic Data Stewardship Research Alliance, a group of more than two dozen companies and organizations.
• The best practices favor academic independence and freedom over tightly controlled research, and encourage broad publication and dissemination of research results, while protecting the privacy of individual research subjects.
• Specific best practices include having a written data sharing agreement, practicing data minimization, and developing a common understanding of relevant de-identification techniques, among many others.
• The guidelines cover best practices and sample language that can be used in contracts with companies that supply data to researchers for academic or scientific research purposes.
• The Ethical Data Sharing Review Committee will conduct prospective reviews of research projects using data not explicitly gathered for research purposes, such as data shared by companies to academic researchers.

Building Communities of Practice

• The 2020 award-winning partnership was between University for California, Irvine, Professor of Cognitive Science Dr. Mark Steyvers and Lumos Labs.
• FPF has continued this award and is currently working on reviewing submissions and looks forward to announcing a 2021 winner in the early summer months.
• Bringing the best academic privacy research into practice.
• Through its Applied Privacy Research Coordination Network, FPF introduces academic researchers to industry practitioners to develop working partnership opportunities and share best practices.
• Integrated Data Systems (IDS) use data that government agencies routinely collect in the course of delivering public services to shape local policy and practice.

Exploring Legal Structures and Policies to Support Processing Personal Data for Research

• Examining country-level legal frameworks for secondary uses of healthcare data. On January 19-20, 2021, the Israel Tech Policy Institute (ITPI), an FPF affiliate based in Israel, co-hosted a virtual workshop in collaboration with the Organization for Economic Cooperation and Development (OECD) and the Israel Ministry of Health (IMoH), titled “Supporting Health Innovation with Fair Information Practice Principles.” The workshop furthered international dialogue on issues critical for the successful use of health data for the benefit of the public, focusing on the implementation of privacy protection principles and the challenges that arise in the process. The discussion included lessons learned during Covid-19. It provided an opportunity for delegates of the OECD Health group (HCQO) and the OECD Data Governance and Privacy in the Digital Economy group (DGP), together with experts in these fields, to discuss progress made toward implementing the 2017 OECD Recommendation on Health Data Governance, and to contribute to the ongoing review of the 2013 OECD Privacy Guidelines. Specific topics discussed included: 
  • Significant national health data governance reforms implemented recently by four countries, which lead legal and operational reforms to strengthen health data governance. These examples were viewed in the context of the WHO Global Strategy on Digital Health.
  • Safeguards for health data sharingto promote innovation while protecting people’s privacy. These may include: 1) ethical review board oversight; 2) de-identification; 3) administrative, technical, and contractual safeguards; 4) safeguards around cross border data flows. 
  • Privacy by Design and state-of-the-art solutions for safeguarding digital health data against unauthorised access and use. The mechanisms available are context-dependent and present unique benefits and limitations.
  • Individual & community perspectives on using health data for research. Some focus on alternative legal bases, other than consent, for the secondary use of patient data for research, and the imperative to respect the individual’s interest alongside that of the community and society.