What are health care data? How are they defined?
Who collects hospital care data?
The state health care data programs are structured in one of the following ways:
- State agency, under a legislative mandate to collect hospital data, collects, analyzes, and distributes the data.
- The state, under a legislative mandate, delegates data collection and distribution to a private, non-governmental agency. The state usually receives an analytic file from the contracting agency. There may be a shared distribution agreement or the independent agency is charged with distribution.
- In states without legislative mandates, a private agency, usually the hospital association collects and distributes the data. In these states, access to the data by the general public varies, though in may cases, these agencies supply data for public health and research purposes.
Which states collect inpatient data?
Which states collect Ambulatory Surgery Data?
Which state collect Emergency Department Data?
Which states collect ambulatory care data?
How can health care data be used in public health programs?
Our organization needs access to health care data for public health. What can be done to ensure it?
The National Association of Health Data Organizations (NAHDO) recommends the following process for acquiring data from statewide hospital discharge data programs.
Prepare and Research. Define the information you need for your project. Prepare your data request based on documentation from the agency’s website and query system (if they have one). Most states place their data documentation (data layouts, technical manuals) on the web, as well as applications for data requests.
Clarify Your Data Needs. Structure your data request as clearly as possible. What is the reporting period, years of data you need? What is the universe of data needed? How much detail do you need---will the public de-identified file suffice or do you need identifiable data? Why? Be prepared to justify the need for the data request.
Build a Relationship and Negotiate. Identify the key contact in the agency. Make an appointment with the Director and/or key staff to discuss your data request (which is based on the research you have conducted in the steps above). Review your project, its goals, objectives, and audiences and how these are aligned with the data agency (hospital associations are supportive of many public health uses if they are well-understood). Let them advise you about what data (and the various options for data) that they can provide for your project and the process to follow for accessing that data. They also know the data limitations and are your advisors as you begin using their data in your project.
Adhere to the Data Request Process. Most agencies have a legally-defined process for accessing data. Private agencies have data release policies defined by a data oversight board. For public use files, a data use agreement may be the most expedient and least burdensome way to access data. Research or identifiable data may require an IRB review, which requires a written request and assurances of data access, security, and storage. The agency staff will assist you with the process. The first data request is the most difficult. Once the relationships and the documentation are in place and the data request is executed, it will be easier next year.
Build and Maintain Trust. Establish and maintain the data sharing partnership. As your project evolves, include the data steward(s) in decisions about analysis and data reports, obtaining guidance from the data stewards as much as needed. No surprises. Keep them in the loop and share results and output with the data steward as much as feasible.