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

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== First Review ==
 
'''Introduction'''
 
'''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.
 
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.
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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.
 
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.
 
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 [[EMR|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.
 +
 +
== Second Review ==
 +
 +
'''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 rendering great risk for both patients and providers.
 
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.
 
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.
  
Line 50: Line 117:
  
 
-“Transparent policies and practices for the secondary use of 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;
 
-Focus on data control and access rather than data ownership per se;
 +
 
-Consensus on privacy, policy, and security;
 
-Consensus on privacy, policy, and security;
 +
 
-Public awareness and trust;
 
-Public awareness and trust;
 +
 
-Comprehensive scope (beginning with a taxonomy); and,
 
-Comprehensive scope (beginning with a taxonomy); and,
 +
 
-National leadership.”
 
-National leadership.”
  
 
An open dialog with the citizens is important for the public trust and to facilitate public informed actions.
 
An open dialog with the citizens is important for the public trust and to facilitate public informed actions.
 +
 +
== Third Review ==
 +
 +
=== Introduction ===
 +
The American Medical Informatics Association (AMIA) gathered a panel of experts and various stakeholders to discuss issues concerning secondary use of health data, and sought to encourage a national discourse on the topic. This paper illuminates the necessity of secondary use of health data by presenting the panel’s key findings and recommendations. It attempts to encourage public and private sector organizations to engage in policymaking that emphasizes the importance of secondary use of health data. <ref name="2007 Safran">Safran, C., Bloomrosen, M., Hammond, W. E., Labkoff, S., Markel-Fox, S., Tang, P. C., & Detmer, D. E. (2007). Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper. Journal of the American Medical Informatics Association, 14(1), 1-9.</ref>
 +
 +
=== Background ===
 +
Secondary use of health data can enhance an individual’s healthcare experience, while expanding knowledge on diseases and treatments. Evidence suggests that the public health community is able to detect emerging epidemics or bioterrorist threats through analysis of aggregated health data. Access to and use of health data, however, poses major challenges, ethically, politically, technically, and economically.
 +
 +
=== Methodology ===
 +
A panel of 36 experts was convened, which included representatives from healthcare providers, technology vendors, pharmaceutical companies, consulting firms, researchers, and more. The panel’s main focus was on the secondary use of person-specific health data. Secondary use of health data was categorized into four main perspectives: the consumer; patient safety, quality, and research; public health; and industry. The panel also recognized the need for terminology clarification and refinement, hence putting forth definition of terms and abbreviations.
 +
 +
=== Major Findings and Recommendations ===
 +
This report detailed the major issues related to secondary uses of health data as the starting point of the nationwide dialogue. The panel presented findings and recommendations. Finding 1: Secondary use of health data is widespread. Recommendation 1: Increase transparency of data use and promote public awareness. Finding 2: The focus needs to be data access and control, not data ownership. Recommendation 2: Focus ongoing discussions on data on data access, use, and control – not on ownership. Several other findings and recommendations were listed in the report.
 +
 +
=== Conclusion ===
 +
A rich array of datasets and sources of information continue to expand as a result of continued clinical and administrative activity. This increasing volume, complexity, and diversity of healthcare care data as well as information systems used in data mining pose a significant problem for the future. Panel members agreed that further efforts for widespread health information exchange must include work to address the pressing issues of secondary health data usage.
 +
 +
=== My Comments ===
 +
Secondary use of health data is essential in quality improvement and patient safety, as well as research and public health. I believe this is an essential part of the health care system, and the findings and recommendations listed by the panel of experts must be taken into account to improve in our access to health data.
 +
 +
=== References ===
 +
<references/>
 +
 +
 +
[[Category:Reviews]]
 +
[[Category:OHSU-W-2007]]
 +
[[Category:HI5313-2015-FALL]]
 +
[[Category:Healthcare informatics professional]]

Latest revision as of 14:03, 19 October 2015

First Review

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.

Second Review

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 rendering great risk for both patients and providers. 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.

Third Review

Introduction

The American Medical Informatics Association (AMIA) gathered a panel of experts and various stakeholders to discuss issues concerning secondary use of health data, and sought to encourage a national discourse on the topic. This paper illuminates the necessity of secondary use of health data by presenting the panel’s key findings and recommendations. It attempts to encourage public and private sector organizations to engage in policymaking that emphasizes the importance of secondary use of health data. [1]

Background

Secondary use of health data can enhance an individual’s healthcare experience, while expanding knowledge on diseases and treatments. Evidence suggests that the public health community is able to detect emerging epidemics or bioterrorist threats through analysis of aggregated health data. Access to and use of health data, however, poses major challenges, ethically, politically, technically, and economically.

Methodology

A panel of 36 experts was convened, which included representatives from healthcare providers, technology vendors, pharmaceutical companies, consulting firms, researchers, and more. The panel’s main focus was on the secondary use of person-specific health data. Secondary use of health data was categorized into four main perspectives: the consumer; patient safety, quality, and research; public health; and industry. The panel also recognized the need for terminology clarification and refinement, hence putting forth definition of terms and abbreviations.

Major Findings and Recommendations

This report detailed the major issues related to secondary uses of health data as the starting point of the nationwide dialogue. The panel presented findings and recommendations. Finding 1: Secondary use of health data is widespread. Recommendation 1: Increase transparency of data use and promote public awareness. Finding 2: The focus needs to be data access and control, not data ownership. Recommendation 2: Focus ongoing discussions on data on data access, use, and control – not on ownership. Several other findings and recommendations were listed in the report.

Conclusion

A rich array of datasets and sources of information continue to expand as a result of continued clinical and administrative activity. This increasing volume, complexity, and diversity of healthcare care data as well as information systems used in data mining pose a significant problem for the future. Panel members agreed that further efforts for widespread health information exchange must include work to address the pressing issues of secondary health data usage.

My Comments

Secondary use of health data is essential in quality improvement and patient safety, as well as research and public health. I believe this is an essential part of the health care system, and the findings and recommendations listed by the panel of experts must be taken into account to improve in our access to health data.

References

  1. Safran, C., Bloomrosen, M., Hammond, W. E., Labkoff, S., Markel-Fox, S., Tang, P. C., & Detmer, D. E. (2007). Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper. Journal of the American Medical Informatics Association, 14(1), 1-9.