November 26, 2019: NCATS Day 2019: Conversations on Responsible Data Sharing

NCATS’ mission is to establish the scientific principles of translation so that more treatments get to more patients more quickly. A potentially transformative paradigm for increasing the efficiency of intervention development is patient and community participation on the translational research team. But like most aspects of translational science, understanding of the principles and best practices of such participation is in its infancy, and successful integration requires focused and continuing effort. NCATS Day, occurring this year on December 17, is a centerpiece of that effort.

In hosting NCATS Day each year, we strive to provide a forum for participants from diverse backgrounds to share their needs, as well as perspectives on addressing those needs. At the inaugural NCATS Day in 2017, I was struck by how easy it was for researchers and patients/community members to misunderstand each other, even though everyone was committed to increasing that understanding. Important and sometimes difficult discussions that day led to insights that greatly advanced our goal of establishing principles of participant engagement. At last year’s NCATS Day, we focused on establishing the expertise, desires and concerns common to all “communities” across the translational spectrum, increasing both NCATS’ understanding of those communities and the communities’ understanding of each other.

This year, we will focus on a ubiquitous and rapidly evolving area of researcher-participant engagement: data sharing.

The collection, analysis and sharing of biomedical data is important for translating research results into new prevention strategies and treatments that can improve health. NCATS has embraced data access and sharing as a lynchpin of our strategy to identify shared aspects of diseases and processes, as well as generalizable principles to use when developing approaches to accelerate translation. Central to data sharing is the recognized need to make it as available as possible while ensuring the confidentiality and autonomy of research participants. These are just some of the topics we will explore during NCATS Day 2019.

NCATS Day 2019: Conversations on Responsible Data Sharing will take place Tuesday, December 17, on the NIH main campus in Bethesda, Maryland. We will discuss data sharing from the research participant, community, researcher, federal funder and industry perspectives and will discuss real-world case studies during panel sessions. The case studies will touch on key issues related to data sharing, such as why data is shared, how it’s accessed and by whom, what it’s used for, and how results are returned to research participants. Breakout discussions will enable deeper conversations and sharing of perspectives on data sharing.

My hope is that NCATS Day 2019 gives us all a more multifaceted view of the nature of data, including the collection, usage and responsible sharing of it. I hope you will join us next month and be a part of this important discussion. Register and access videocast information on the NCATS Day 2019 page.

Christopher P. Austin, M.D.
National Center for Advancing Translational Sciences