Resources

The Data Sharing For Research Tracker is a growing list of organizations that make data available for researchers. This Tracker provides information about the available data, access restrictions, and relevant links and is intended to help researchers find data for secondary analysis. It also allows organizations to raise awareness about their data sharing programs and […]

The New York legislature passed S929, the New York Health Information Privacy Act (NYHIPA), on January 22. This bill has similar scope and scale as Washington State’s landmark My Health My Data Act (MHMD), with some key differences. The Future of Privacy Forum (FPF) submitted a letter to Governor Hochul’s office, highlighting certain ambiguities in […]

As the D.C. Council considers the important issue of safeguarding health data, FPF writes with feedback on the role of consent in the Consumer Health Information Privacy Protection Act of 2024 (“CHIPPA”). We commend the D.C. Council’s efforts to advance individual health data privacy rights and protections. CHIPPA is closely modeled on Washington State’s My […]

Today, FPF is releasing an infographic that provides insights into how organizations are responding to the transparency requirements of recently enacted U.S. state health privacy laws. The infographic reflects a survey of privacy notices on the websites of 180+ companies across a variety of industries and sectors, from pharmaceutical to apparel.

Enforcement activity intensifies as U.S. consumer privacy laws continue to evolve and come into effect. In 2023 and 2024 alone, there have been dozens of enforcement actions at the U.S. federal and state levels, some of which reveal or touch on significant throughlines for privacy policy issues, such as what constitutes a privacy violation or […]

In April 2023, the Department of Health and Human Services Office of Civil Rights (HHS OCR) initiated a Notice of Proposed Rulemaking (NPRM) “To Support Reproductive Health Care Privacy” and “modify existing standards by prohibiting uses and disclosures of [Protected Health Information (PHI)] for criminal, civil, or administrative investigations or proceedings against individuals, covered entities […]

In 2023, health data privacy developments were nearly all related to the continuing development of privacy law responses to the Supreme Court’s Dobbs decision and subsequent moves by states to bar access to certain reproductive health care services and to criminally prosecute individuals seeking access to that care. As reproductive health care remains in jeopardy […]

On June 15, 2023, the Future of Privacy Forum (FPF) filed comments with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) regarding the Notice of Proposed Rulemaking (NPRM) on extending additional protections to reproductive health care data under the Health Insurance Portability and Accountability Act (HIPAA). FPF’s full comments […]

The Israel Tech Policy Institute (ITPI) published a report on key issues emerging from the OECD Workshop: ‘Supporting Health Innovation with Fair Information Practice Principles‘. The OECD Workshop was held virtually from 19 – 20 January 2021, in collaboration with the Israeli Ministry of Health and the Israel Tech Policy Institute. The report was drafted by Limor Shmerling Magazanik based on […]

On July 28, 2020, the Washington State Senate Committee on Environment, Energy & Technology held a Public Work Session to discuss government uses of data and contact tracing technologies. The Committee invited guest experts to give presentations, including FPF’s Senior Counsel Kelsey Finch, Consumer Reports’ Justin Brookman, and the Washington State Department of Health.  In […]