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. 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:
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.
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.
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.
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.