Digital Health Ecosystems

WPF advises FDA and HHS on informed consent guidance for medical research

The World Privacy Forum filed detailed comments regarding draft guidance on privacy and medical research to the U.S. Department of Health and Human Services and the U.S. Food and Drug Administration. The proposed guidance, Facilitating Understanding in Informed Consent, is related to consent for human subject research (medical research) and is particularly important. Currently, models of consent are in the process of going digital, which has created a number of challenging problems to solve. In the comments, WPF had several recommendations to improve consent and privacy.

WPF to speak before the State House of Mongolia for its National Consultation on e-Health, and before the Human Rights Commission of Mongolia

5 April 2024, Paris, France — World Privacy Forum Executive Director Pam Dixon has been invited to speak at the State House of Mongolia for the Government of Mongolia’s National Consultation on e-Health. She will be speaking twice at this event; first, on the topic of Artificial Intelligence in Healthcare and second, on Big Data in e-Health.  She will be presenting later in the week on AI governance and Privacy before the Ministry of Digital Development and Communications, and on the topic of AI Governance Tools before the National Human Rights Commission of Mongolia. All speeches will take place in Ulaanbaatar, Mongolia.

WPF advises HHS regarding proposed changes to standards for privacy under HIPAA

WPF provided detailed comments to the US Department of Health and Human Services regarding its proposal for changes to HIPAA regarding modifications to the Privacy Rule. Specifically, HHS proposed modifications to standards for the privacy of individually identifiable health information. WPF supports many of the changes proposed in the NPRM.

WPF advises HHS on confidentiality of patient records re: alcohol and drug treatment records

The World Privacy Forum (WPF) submitted comments on an important Notice of Proposed Rulemaking that proposes modifications of the protection requirements for substance use disorder (SUD) treatment records. Currently, health records regarding treatment for Substance Use Disorders receive special protections under what is called Part 2 regulations , or, 42 ...

WHO Health Data Collaborative Meeting: high level overview

Last week, the World Health Organization held an in-person meeting of its health data collaborative leadership, its first face-to-face meeting of this group in four years. WPF attended as a constituency co-chair. Attendees included: members of the Ministries of Health and partner representation from Kenya, Malawi, Cameroon, Botswana, and Nepal; ...

OECD Going Digital Horizontal Project: news and event

WPF’s Executive Director Pam Dixon will be presenting at an upcoming OECD Workshop on the topic of data stewardship, access, sharing, and control in regards to national data strategies. WPF will be speaking as a organizational member of the formal civil society stakeholder group at OECD (CSISAC). https://www.oecd.org/digital/going-digital-project/ ). This ...

WPF urges FTC Chair and Commissioners to update FTC Health Breach Notification Rule

The FTC held an historic open FTC Commission meeting, during which the Chair and Commissioners conducted their business openly and also provided an opportunity for public comments. The World Privacy Forum was selected to provide a public comment, which focused on the need to update the Health Breach Notification Rule. 

WPF Statement to the Civil Society Consultation on Sustainable Health Security Preparedness and Response, C20, 2021

The World Privacy Forum participated in the C20 Civil Society Consultation on Sustainable Health Security Preparedness 20 April, 2021, part of the preparatory work for the G20 health-related declaration. (Rome Declaration.) In our attached statement to the C20 / G20, we outline three key requirements to allow safe and sustainable health data ecosystem knowledge utilization, including privacy and effective data governance, interoperability, and robust inclusion of LMICs and vulnerable or marginalized populations in standards development.