HEAL Data Ecosystem

The NIH HEAL Initiative® is a collaborative, multi-institute effort supporting research to accelerate scientific and clinical discovery for treating pain and opioid use disorders. The HEAL Data Ecosystem (HDE) provides the infrastructure for the HEAL Initiative’s data management and sharing strategy through coordination of two primary tools and two support teams. The tools include the HEAL Data Platform and HEAL Semantic Search, and the support teams include the HEAL Data Stewardship Group and HEAL Data Platform team. These partners work together to:

  • Aid investigators in making their data findable, accessible, interoperable, and reusable (FAIR) to meet HEAL data sharing compliance requirements
  • Develop the HEAL Data Platform so researchers can discover and compute over HEAL datasets
  • Develop HEAL Semantic Search so researchers can explore the conceptual knowledge, synonyms, and relationships that intersect with HEAL research areas

Check out the sections below for more details on how the HDE tools and support teams help investigators advance open science in the NIH HEAL Initiative®.

 

HEAL Data Ecosystem Tools

HEAL Data Platform

The HEAL Data Platform is a search and discovery interface powered by rich metadata and secure, cloud-based workspaces. Instead of storing the data, the Platform interoperates with the individual repositories in which HEAL data are deposited, providing secure access to datasets under the access restrictions and approval processes established by the corresponding repository.

HEAL Semantic Search

HEAL Semantic Search (HSS) provides a smart way to explore the conceptual knowledge, synonyms, and relationships that intersect with HEAL research areas. By entering a search term on HSS, users can discover related biomedical concepts, studies, and variables, as well as identify related datasets and variables for further analysis. This tool complements the HEAL Data Platform’s free-text HEAL study and dataset search.

 

HEAL Data Ecosystem Support Teams

HEAL Data Stewardship Group

The HEAL Data Stewardship Group (‘HEAL Stewards’) comprises members from the Renaissance Computing Institute (RENCI) at UNC-Chapel Hill and RTI International. The HEAL Stewards are responsible for:

  • Organizing, leading, and maintaining governance structures for the HDE, including the Collective Board
  • Leading the development and implementation of outreach and engagement strategies, including webinars, workshops, and other training for community members
  • Leading HEAL Semantic Search integration with the HEAL Platform
  • Providing guidance for selecting a repository and submitting datasets and metadata
  • Developing documentation and supporting materials for interacting with HEAL Semantic Search

For questions or assistance related to data management, data sharing, data standards, data analysis, repository selection, or general information, contact the HEAL Stewards through the Connect With Us form.

HEAL Data Platform

The HEAL Data Platform (‘HEAL Platform’) team designed and built the HEAL Platform, and is comprised of members from the University of Chicago and the National Opinion Research Center (NORC). The team provides user support for registering a study, submitting metadata, and using the cloud-based secure HEAL workspace and continues to develop the Platform to improve and enhance the user experience. To connect with the HEAL Platform team for inquiries related to registering your study, submitting metadata, obtaining access to a cloud-based workspace or workspace account, or technical questions, email heal-support@gen3.org.

 

Framework Reports

HEAL Sustainability Guide

The HEAL Sustainability Guide focuses on investigator and repository roles, and potential risks and mitigations, in long-term storage and usability of data to provide checklists and suggestions. Following the checklists will enable HEAL investigators to maximize their data sustainability at each stage of their research study.

HEAL Strategic Framework

The HEAL Data Ecosystem Strategic Framework establishes how the ecosystem works (architecture and governance), how HEAL stakeholders navigate the environment, the general principles guiding the ecosystem and the key performance indicators that will measure the ecosystem's success. This framework serves the NIH Program Office, HEAL Stewards, HEAL Platform, HEAL data generators, and HEAL data users in the following aspects: (1) Communications within the Ecosystem and with other communities interested in contributing to the HEAL Initiative goals (2) Ongoing efforts of developing an implementation and sustainability plans for the HEAL data (3) Clarifies the roles of the Ecosystem components (4) Helps to provide clarity on the complex HEAL Data Ecosystem landscape.

NIH HEAL Initiative Data Asset Inventory 1 Report (DAI-1)

Data Asset Inventories (DAIs) contain records describing the data assets maintained by an organization, and allow companies to collect metadata on their data assets and data types. They can also include information about volume, storage, and sharing practices. The HEAL DAI was deployed to collect such information on HEAL awards. The inventory generated considerable engagement between the NIH HEAL Stewards and HEAL investigators and their teams, with approximately 18% of all HEAL awards submitting responses. The inventory revealed existing gaps in the HEAL ecosystem’s data processing and management efforts. Additionally, the resulting analysis clarified several general areas where researchers need assistance, including repository selection, metadata collection, and public access and data sharing plans. The key findings of the DAI are summarized in the NIH HEAL DAI-1 report.

NIH HEAL Initiative Data Asset Inventory 2 Report (DAI-2)

The second wave of the Data Asset Inventory (DAI-2) was conducted in 2023 and focused on studies first funded between 2019 and 2022. A total of 351 invitations to complete DAI-2 were distributed, and 125 responses were received. The findings, summarized in the NIH HEAL DAI-2 report, identify opportunities and challenges facing HEAL researchers throughout the data lifecycle.

 

For More Information

Visit the NIH HEAL Initiative® ‘About’ page for more information about the HDE. Recordings of webinars conducted by HDE grantees on topics related to dissemination of research findings and community engagement are available at the YouTube playlist here.