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README.md

README.md

CD2H Informatics Maturity and Best Practices Core

Leadership

Adam Wilcox, Director (UW)

Chunlei Wu, Co-Director (Scripps)

Other Core Members

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Year 3 Budget

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Specific Aim

The mission of the CD2H Informatics Maturity and Best Practices Core is to support development and dissemination of best practices for open science and data within the CTSA hubs and to other organizations pursuing translational science.

Research Strategy

Our approach is to determine, define and disseminate best practices in data use and informatics to the CTSA community. Extending work done by experts in the CTSA informatics community and research informatics community at large, we are identifying various models of best practice in using, sharing and re-using health data. Where models are not defined, we are engaging the CTSA community to help in developing and advancing such models. We are identifying how best to facilitate dissemination and adoption of best practices, and are creating tools to help sites assess, facilitate and execute FAIR data principles. This strategy is demonstrated through activities such as:

  • Development and deployment of methods for using maturing models in research informatics;
  • Identification and definition of best practices and adoption models across broad topics of need;
  • Development of tools for assessing and comparing best practice approaches;
  • Creation of a collaborative guidebook for best practices in reusable data;
  • Development of an interactive web portal and metadata-authoring web portal for reusable data;
  • Collection of data sharing agreements in a library;
  • Definition of matrixed dimensions that affect data sharing agreements;
  • Development of a data sharing agreement template tool.

Significance

CTSA hubs have advanced multiple approaches for data sharing and use, yet the best approaches for success have not been defined. As a result, there are likely variations in practice and impact across sites, with organizations not able to leverage well or apply the lessons learned by other sites. It is also unclear how best to achieve efficient use of data with maximum impact.

Innovation

We have identified models for disseminating best practices, and are working with the CTSA community to define best approaches for improving adoption of these practices. It is also critical that sites know the most important pathways for success, so that investments in data are well defined and understood in terms of value and effect.

Justification and Feasibility

The need for best practices dissemination was a foundational principle of the CD2H original proposal. As many organizations are striving to improve their use of data, there have not been sufficient frameworks to define best practices and pathways to success. Demonstrations of successful instances can be ineffective when too many differences exist between complex organizations. Pathways and tools to define and facilitate adoption of best practices are needed.

Summary of existing system and findings

See CD2H Labs for our latest demonstration platforms. These include:

  • Maturity Models
  • Reusable Data Best Practices Portal
  • Governance Pathways

Approach

Both the UW and Scripps teams are leading projects in collaboration with other sites (e.g., OHSU). Each team is developing models and tools for the CTSA informatics community, of the CTSA informatics community, and by the CTSA informatics community. The requirements for the models and tools are defined by the needs of CTSAs. We have also surveyed the institutions directly to ensure that lessons learned at sites are elevated to be incorporated into general learning approaches. Finally, we are increasingly partnering with the CTSA informatics community in the actual development and implementation of models for best practice.

Progress Report

For the maturity models project, we have developed interview guides and conducted on-site and virtual interviews in over 20 CTSA sites. As part of these interviews, we have collected artifacts that support the information gained from the interviews. We have identified important principles for best implementation of the interview guides.

For the governance pathways project, we have started with collection and initial analysis of data sharing principles from multiple sites. This was done in conjunction with a broader effort to define data sharing at the University of Washington.

For the reusable data portal, we have created repositories for metadata schemas, a best practices web portal, a data repository schema, and other metadata schema utility tools.

Current Projects

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