Helping to End Addiction Long-term (HEAL) Data Support
Problem
NIH needed data sharing strategy and support for its efforts to combat the opioid crisis.
The public health crisis of opioid misuse, addiction, and overdose in America continues to evolve rapidly and overlaps with other significant public health challenges, including untreated chronic pain and mental illness. The National Institutes of Health's Helping to End Addiction Long-term® (HEAL) Initiative is an NIH-wide effort to speed scientific solutions to the national opioid public health crisis. HEAL brings together scientists, community members, the private sector, and multiple levels of government and, since the initiative’s inception in 2018, it has funded over 1,000 projects nationwide focused on addressing the opioid epidemic through:
- Understanding, managing, and treating pain
- Improving prevention and treatment for opioid misuse and addiction
To facilitate learning, communication, and collaboration across HEAL-funded researchers and other research and non-research communities working towards the common goal of speedy solutions to the opioid crisis, HEAL pioneered strict data sharing requirements for all awardees well ahead of the 2023 NIH data sharing policy rollout. HEAL also sought partnerships with UChicago and RENCI/RTI to address challenges, including how to:
- Operationalize a pioneering data sharing policy among diverse researchers
- Expose data in a manner that invites researchers and non-researchers to the table, and promotes a collaborative community that will validate and build on each other’s work
Solution
NORC is supporting HEAL-related data infrastructure and sharing efforts.
The NIH HEAL Initiative partnered with UChicago/Center for Translational Data Science (CTDS) to conceptualize and implement data sharing, discovery, and collaboration infrastructure. NORC is subcontracted to support this work, considering important questions such as:
- Where to put data so that it is secure and stably available
- How to share data so that it is findable, accessible, interpretable, and usable
- How to make data and knowledge easily discoverable
NORC supports CTDS through:
- Convening and leading or participating as subject matter experts in working groups that address such critical topics as:
- Data storage architecture
- Distributed repository desired characteristics and interoperability
- Metadata model development, technical specifications, and implementation
- Data Sharing Consultancy (DSC)—Sustained engagement with HEAL investigators to support data sharing strategy and implementation
- Data Sharing Consultancy Generalizable Deliverables—Leveraging specific DSC cases to develop best practices and tools to support all HEAL investigators
- Collaborative Projects—Conceptualizing and proposing cross-study collaborations, serving as coordinators and active collaborators
Result
NORC’s support activities have been wide-ranging and impactful.
Through our support activities, NORC has:
- Managed complex collaborations across UChicago/NORC, NIH, and RENCI/RTI to draft, design, and operationalize:
- Decentralized data storage architecture, with data held in distributed repositories and the HEAL Platform web-portal as central connecting hub for discovery and collaboration
- HEAL Study- and Variable-level metadata specifications, mechanism for provision by investigators, and incorporation into award data sharing requirements
- Published design specifications for study- and file-level standard data package metadata files in machine-readable JSON schema and CSV formats
- Published best practices for how and when to implement data packaging based on study profile and guidance on identifying study group’s ‘best fit’ profile
- Developed software tools to operationalize data packaging steps laid out in best practices, including creating and completing standard data package metadata files
- Collaborating with the HEAL JCOIN Survey Core to calculate state-level OUD stigma estimates, and make estimates available to researchers
Learn More About the Study
Visit the NIH project site to learn more about the study, including funded projects, details about the HEAL data ecosystem, and information about public access and data sharing.
Project Director
Related Tags
Project Leads
-
Andrea Tentner
Senior Data ScientistCurrent Project Director & Principal Investigator -
Felicia LeClere
Distinguished Senior FellowFormer Project Director & Principal Investigator
Resources
Best Practices & Tools
"We're constantly bombarded by headlines implying that data and the ongoing explosion in data and data processing power can 'solve the world.' Of course, data can be an incredibly powerful ingredient in answering questions critical to humanity. But no matter how much data are out there, they're as good as usefuless if people do't know that they exist, can't access them, or don't understand them deeply enough to use it."
