CARES Data Sharing Policy for State Participants:
Goals of the data sharing committee:
- To extend the process that we have already have in place at the national level to the state level
- Local EMS agencies and hospitals have ownership over their own data. The goal of the data sharing committee is to protect their privacy and oversee the use of the data belonging to EMS agencies and hospitals.
- To ensure that all involved parties have consented to the use of their data, or, if the research or analysis is de-identified, cumulative data, that it was approved by a committee.
- To ensure participation and support from all stakeholders
- To avoid duplication of effort and data mining
When data sharing committee approval is needed:
- When someone is requesting cumulative, de-identified data for analysis, research or quality improvement initiatives. This includes data analysis that is for purposes other than research.
When data sharing committee approval is not needed:
- When a local agency is analyzing their own data
- When a group of local agencies have agreed on the analysis in writing
- Data used for annual summary reporting
Members of the committee to include (maximum 6 people):
- Physician representative from the respective State
- State CARES coordinator
- Respective CARES coordinator and PI of CARES Program
- Any other person(s) from the state with an interest in data sharing oversight
Researchers interested in obtaining cumulative, de-identified data will:
- Submit a data sharing application to include project summary.
- Respect a timeline to completion of three months for an abstract and nine months for a publication.
- Submit a final version of their project for review and approval by the committee.
- Expect to get feedback within 6-8 weeks of initial request.
- Sign the CARES Non-Disclosure Agreement for Information Recipients prior to receiving the requested dataset.
Committee members will:
- Review proposals
- Make suggestions
- Review final abstract or publication before release