Advancing Cancer Research Data Exchange: Summit Insights
Addressing barriers and enablers in cancer data sharing, this session explores strategies such as enhancing partnerships, developing unified data standards, and incentivizing adherence. Follow-up steps include drafting data sets for the USCDI+ Platform and organizing a video conference for industry engagement.
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Cancer Research Data Exchange Summit Session 10: USCDI+ Cancer Next Steps May 8 9, 2024
2 2 Barriers and Enablers Barriers: Enablers: Structural and technological limitations impeding data entry and sharing. Leadership and stakeholder alignment on data collection standards. Regulatory and financial challenges affecting systematic data collection. Technologies like FHIR Implementation Guide to enhance data interchange. Variations in documenting, reporting and different data standards for the same data. Initiatives like USCDI+ aimed at streamlining and improving data quality. Data handling variations by site TEFCA and Qualified Health Information Networks Patient information gaps
3 3 Thinking ahead Strategic Solutions: Enhanced partnership with EHR and (NGS) lab vendors on the reporting. Future State Changes: Development of a unified standard for data exchange across healthcare systems. Focused data sets and standardized data entry protocols. Real-time data updates and integration to support clinical decision- making. Incentives for adherence to data standards and quality. Continued collaboration and consensus-building among key stakeholders.
4 4 Typical next steps Our current next step Generate a summary/landscape document regarding our learnings to date across all use cases. Draft data set to go onto USCDI+ Platform Draft FHIR Implementation Guide(s) Public comment period Certification and regulations? Test IGs Finalize IGs Adoption and Scale
5 5 More Conversations to Come Near future plan (mid to late summer) to organize a video conference to share the findings of the Cancer Research Data Exchange Summit last two days It will be aligned with the publication of the draft dataset on USCDI+ Platform Focus on data quality and quantification frameworks that will be needed to ensure IGs will work as intended Planning additional industry engagement into this community actively Respective federal agency foundations will facilitate such engagement.
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