What Did You Do with Your Summer Vacation?

Well, if you are spending the summer at the NIH, you’ve likely been engaged in one of our many activities designed to access critical data and advance our understanding of the human experience by linking data sets together. Today, we are inviting you to engage in some additional best practices in accessing controlled data in ways that support science and preserve privacy.

In 2020, the NIH Scientific Data Council charged its Working Group for Streamlining Access to Controlled Data to spend a year engaging in dialogue within the NIH and with our extramural colleagues to better understand the experiences of scientists and the strategies that both facilitate and impede access to data. The group also considered where in the research process NIH should inform, engage, and gain consent of participants sufficiently to support science driven by access to controlled datasets.

NIH stores and facilitates access to many datasets, both open and controlled, with the goal of accelerating new discoveries and thereby maximizing taxpayer return on investment in the collection of these datasets. Data derived from humans that are shared through controlled-access mechanisms reflect NIH’s commitment to protect sensitive data and honor the informed consent provided by research participants in NIH-supported studies.

NIH has supported multiple controlled-access data repositories that uphold appropriate data protections for both human data and other sensitive data, while meeting the needs of various researcher communities. However, as data access requests increase, new repositories are established, and new mechanisms of providing access to data are developed, it is apparent that opportunities remain to improve efficiency and harmonization among repositories to make NIH-supported controlled-access data more FAIR: Findable, Accessible, Interoperable, and Reusable and to ensure appropriate oversight when data from different resources are combined. While these trends are enabling datasets and datatypes to be combined in new ways that advance the science, datasets, and datatypes that may or may not be controlled may, when combined, create inadvertent re-identification risks.

To help the agency address these issues in a way that is responsive to community needs, we are hosting a series of webinars through the end of July. We call these “breakout sessions” because they follow an outstanding webinar presented on July 9 available here. Richard Hodes, MD, director of the National Institute on Aging, launched the 3-hour seminar with a talk titled Opportunities for Advancing Research Through Better Access to Controlled Data. Ana Navas-Acien, MD, PhD, brought the perspective of indigenous and communities of people traditionally underrepresented in research, and she emphasized themes of community engagement and broadening the consent framework to consider community-level accountabilities as well as individual assent. Lucila Ohno-Machado, MD, MBA, PhD, addressed privacy preserving distributed analytics as a strategy to promote science while preserving privacy of data. Hoon Cho, PhD, described privacy-enhancing computational approaches to privacy preservation.

You can find the schedule for the breakout sessions below. These sessions are specifically designed to listen to the expectations, hopes, and concerns from researchers and participants. These webinars are free and open to the public; registration is required.

Breakout Session on “Making Controlled-Access Data Readily Findable and Accessible” on July 22 from 3 pm to 5:30 pm EST

Breakout Session on “General Opportunities for Streamlining Access to Controlled Data” on July 26 from 12:30 pm to 2 pm EST

Breakout Session on “Addressing Oversight, Governance, and Privacy Issues in Linking Controlled Access Data from Different Resources” on July 28 from 3 pm to 5:30 pm EST

To generate interest and hear from the broadest possible group of stakeholders, NIH has released a Request for Information on Streamlining Access to Controlled Data from NIH Data Repositories. Please note the closing date is August 9. We look forward to hearing from you! Please visit Streamlining Access to Controlled Data at the NIH for all of the information described in this post.

Finally, we would like to personally thank the many NIH staff members who serve on the working group:

  • Shu Hui Chen
  • Alicia Chou
  • Valentina Di Francesco
  • Greg Farber
  • Jamie Guidry Auvil
  • Nicole Garbarini
  • Lyric Jorgenson
  • Punam Mathur
  • Vivian Ota Wang
  • Jonathan Pollock
  • Rebecca Rodriguez
  • Alex Rosenthal
  • Steve Sherry
  • Julia Slutsman
  • Erin Walker
  • Alison Yao

I hope your summer vacation was as productive as ours!

(left to right)
Patricia Flatley Brennan, RN, PhD, NLM Director
Susan Gregurick, PhD, Associate Director for Data Science at NIH
Hilary S. Leeds, JD, Senior Health Science Policy Analyst for the Office of Science Policy at NIH