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.
- Limited or de-identified data sets (Public Use Files)
- Data Use Agreements (DUA’s)-About DUA’s and examples
- Guidance Document on Creating and Releasing Hospital and Facility Discharge Data Public Use Files
- Testimony To NCVHS from Denise Love- The communicty as a learning system for health: Using local data to improve community health
- NAHDO Webinar: Creating and Releasing Hospital and Facility Discharge Data Public Use Files
- Guidelines for working with small numbers- WA DOH
- CDC-ATSDR Data Release Guidelines and Procedures for Re-release of State Provided Data
- Maryland Hospitalization Data for the Maryland Tracking Network: Retrospective Assessment for Data Acquisition
- Hospitalization Data Acquisition for Tracking Webinar Slides
- Next Steps for the InterState Exchange of Nonresident Data Between State Health Data Organizations
- Management and Institutional Controls for Reducing Disclosure Risk in Web-based Data Dissemination of Public Health Data Guidelines and Resources for Health Data Organizations
- Evaluation of State-Based Integrated Health Information Systems
- URL of state based WDQS. Updated by NAHDO, Original source; D J Friedmand and R Gibson Parrish II, 2006, Characteristics, Desired Functionalities, and Datasets of State Web-based Data Query Systems, J Public Health Management Practice, 12(2). 119-129; Last updated 2008
- Journal of Public Health Management and Practice, Issue Focus, State Web-based Query Systems, March-April 2006, Volume 12, Number 2.
Articles discuss current trends in WDQS features and functionality, different approaches, challenges and lessons learned by states that have implemented a WDQS, the connection between public health assessment and the utility of WDQS. 2006
- Issues in Evaluating Health Department Web-based Data Query Systems: Working Papers
Edited byD J Friedman and R Gibson Parrish- Funded by Robert Wood Johnson Foundation 2008
- Evaluation of State Health Department Web-based Data Query Systems and Interactive Quality Reporting Sites Daniel J. Friedman and R. Gibson Parrish 2009
- Public Health Data Dissemination Guidelines: NAHDO Working Technical Paper Series
July 2005 Funded by the Centers for Disease Control Assessment Initiative
Edited By: Gulzar H. Shah, MStat, MSS, Ph.D.