Health care data has become increasingly easy to create, collect and store over the last decade. However, the industry is still working toward next steps in unlocking the potential of that collected data: preparing the data in such a way that it can be found and accessed; breaking down storage silos while also maintaining patient privacy; and teaching researchers, policymakers, physicians and patients how to effectively analyze and make use of the wealth of data that can inform decisions and policy.
The NIH Helping to End Addiction Long-term Initiative, or NIH HEAL Initiative, is an aggressive, trans-agency effort to speed scientific solutions to stem the national opioid public health crisis. Recognizing the need to capitalize on the data their researchers are gathering in support of this mission, the NIH HEAL Initiative is providing up to $21.4 million over five years to the Renaissance Computing Institute at the University of North Carolina at Chapel Hill and RTI International to help researchers successfully and securely prepare and sustain data from more than 500 studies.
RENCI and RTI will work in partnership with the HEAL-funded team at the University of Chicago that is building a cloud-based platform to allow HEAL researchers, other investigators and advocates, health care providers and policymakers to easily find NIH HEAL Initiative research results and data and use them to inform their own research, practice, policies and programs.
According to Rebecca G. Baker, director of the NIH HEAL Initiative, data is the currency of lifesaving and evidence-based practice.
“To be maximally useful, data must be findable to support new research and secondary analyses, as well as to guide education and policy about pain and addiction,” said Baker. “Preparing data to be easily discoverable can be a challenging and resource-intensive task. While most recognize the need to make data findable, accessible, interoperable and reusable, not all research teams have the resources or expertise to do this. The RENCI/RTI group, in partnership with the Chicago team, will be available to HEAL-funded investigators to augment efforts where needed.”
Sharing HEAL-generated results and associated data as rapidly as possible will allow the broader community to ask and answer new research questions; conduct secondary analyses; and address fast-evolving challenges that surround pain management, opioid use and misuse and overdose. NIH HEAL Initiative data are highly diverse and include imaging/microscopy, behavior, genomics, pharmacokinetics and more.
“Providing efficient and secure access for investigators to combine data from different studies should give us a much more accurate overall picture of how challenges around pain management and addiction can be addressed,” said Stan Ahalt, director of RENCI. “Given the urgency of HEAL’s mission, we are thankful to be able to provide expertise that can facilitate discovery of important elements hidden within the data.”
To bring these hidden elements to light, the RENCI/RTI team will study the existing NIH HEAL Initiative data efforts and collaborations and through engagement with HEAL investigators will produce use cases and requirements for working across diverse data types.
“We will ensure that the ecosystem architecture is purpose-built and that the ecosystem team provides the on-hand expertise to address HEAL’s needs as the research evolves,” said Rebecca Boyles, director and senior scientist in the Research Computing Division at RTI International.