Data Access and Release

Overview of Release of Healthcare Data
A potential user (requester) of health care datasets needs to understand the history of the data collection, historical uses and the rules and regulations that affect the collection and release practicies.  Although there are many similarities between states, the approaches will differ, depending on the agency that is responsible for the ownership and control of the data. For example, a state agency has a broad range of data ‘customers’ and must respond to each of their groups needs, whereas the hospital association must respond to their membership as a primary customer.

In states that collect discharge data under a state mandate, the release of identifiable data is governed by state laws which are usually more restrictive then federal laws such as the Health Insurance Portability and Accountability Act of 1996 Privacy Rule. In states without a legislative mandate to collect the data and for states with legal mandates in which the hospital association controls the data, the data disclosure policies may vary the greatest. If the hospital association or a private entity serves as a delegated authority, the public health authority may have access to data for public health purposes.

The state data agency profiles provide links to states laws governing the collection and release of the data and release policies.

Following are resources to assist a data user navigate the data acquisition process as well as resources for data agencies looking to improve/modify their data access and release polices and methods.