Difference between revisions of "Toward a national framework for the secondary use of health data"

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Major Findings and Recommendations:'''
 
Major Findings and Recommendations:'''
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1.“Secondary use of health data is widespread
 
1.“Secondary use of health data is widespread
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Recommendation: Increase transparency of how data are used and promote public awareness.
 
Recommendation: Increase transparency of how data are used and promote public awareness.
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2.The focus needs to be data access and control, not data ownership.
 
2.The focus needs to be data access and control, not data ownership.
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Recommendation: Focus ongoing discussions on data access, use and control—not ownership.  
 
Recommendation: Focus ongoing discussions on data access, use and control—not ownership.  
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3.Critical issues include patient privacy and public trust.  
 
3.Critical issues include patient privacy and public trust.  
 
Recommendation a: Discuss privacy policies and security for secondary use of health data.  
 
Recommendation a: Discuss privacy policies and security for secondary use of health data.  

Revision as of 18:44, 9 March 2007

Introduction The American Medical Informatics Association (AMIA) convened a panel of stakeholders and experts to discuss issues related to the secondary use of health data. This report presented the panel’s key findings and recommendations, and recommended the development of national framework for the use of secondary health data.

Background Modern data-intensive health care generates terabytes of data as a result of laboratory auto-analyzers, pharmacy systems, clinical imaging systems and health administrative systems. Today, clinical information is captured electronically as structured data or free text, and can include digital-voice dictations or scanned hand-written records; as EHRs become a standard for clinical practice, even more information will be created. While this information can lead to better, more personalized and more efficient health information for patients, aggregate health data can be valuable for research, public health, and commercial applications. Use of secondary health data can greatly increase knowledge of diseases, treatments and the understanding of the effectiveness of health care systems; however, at the same time, access to this information has complex ethical, political, technical and economic challenges. “[The] federal government has initiated real-time collection of data from emergency rooms and other sources without public dialog, based on authority form existing public health law.” There are already reports of the buying and selling of non-anonymized patient and provider data, and personal health information (PHI) when used by entities not explicitly mentioned in the HIPAA regulations has a potential lack of protection. With public and private sector promotion of EHR systems, and the simultaneous promotion of nationwide health information networks, population-based studies and clinical research networks, it becomes necessary to re-examine implications from secondary use of person-specific data. National-, state-, regional- and organizational-level initiatives are being developed to address the secondary use of health data.

Methodology A steering committee set the goals and an agenda for a meeting. Four main perspectives of the secondary use of data where considered: the consumer, patient safety, quality, and research. An open discussion was followed by four small group discussions; discussions were summarized, including areas of agreement and ideas for future discussions.

Definition of Terms and Abbreviations A need to clarify terminology was soon recognized by the panel. Some of the terms defined were: anonymized data, commercialization, covered entity, de-identified data, electronic health record, health data, personal health record, primary use of data, reversibly anonymized data, and secondary use of data.

Meeting highlights Consumer perspective: focused on issues of privacy and the security of personal health information. Patient safety, quality, and research perspective: considered the challenges related to conducting research with data from a third party. Public health perspective: discussed the use of data for purposes of emergency preparedness, public health, epidemiology and homeland security. Industry perspective: Discussed the use of health data for business and proprietary purposes. Major Findings and Recommendations:

1.“Secondary use of health data is widespread

Recommendation: Increase transparency of how data are used and promote public awareness.

2.The focus needs to be data access and control, not data ownership.

Recommendation: Focus ongoing discussions on data access, use and control—not ownership.

3.Critical issues include patient privacy and public trust. Recommendation a: Discuss privacy policies and security for secondary use of health data. Recommendation b: Increase public awareness of benefits and challenges associated with secondary use of health data. 4.Technological capabilities to merge, link, re-use, and exchange data out pace establishment of policies, procedures, and processes to do so ethically and legally. Recommendation a: Create a taxonomy for secondary uses of health data. Recommendation b: Address comprehensively the difficult, evolving questions related to secondary use of health data. 5.Progress requires additional attention and leadership at state and national levels. Recommendations: Focus national and state attention on the secondary use of health data.”

Conclusion The use of clinical information systems has created great amounts of rich data sources and databases. These data contain personal or potentially identifiable data. The increasing number of database being interlinked can facilitate the identification of previously de-identified data, and with the growing number of business using secondary health data is a primary concern. The panel's recommendations provide a guideline for what should be the components of a national framework for secondary health data:

-“Transparent policies and practices for the secondary use of health data; -Focus on data control and access rather than data ownership per se; -Consensus on privacy, policy, and security; -Public awareness and trust; -Comprehensive scope (beginning with a taxonomy); and, -National leadership.”

An open dialog with the citizens is important for the public trust and to facilitate public informed actions.