AMIA
Releases Report Outlining Recommendations for a National
Framework on the Secondary Use of Health Data
Other Toipcs: EDIS
Emergency Department Information Systems,
Medical Communication Systems
U.S. Newswire
September 11, 2006
Bethesda, MD -- The American Medical Informatics Association (AMIA)
has released a report today entitled "Toward a National
Framework for the Secondary Use of Health Data". This report is
the result of an expert panel meeting convened earlier this year
by AMIA.
As health data have proliferated, the realization of the
potential value of the information has grown. The use of health
data can not only enhance health care experiences for
individuals, but also expand knowledge about disease and
appropriate treatments, strengthen understanding about the
effectiveness and efficiency of our health care systems, support
public health and security goals, and aid businesses in meeting
the needs of their customers. Yet, access to and use of
aggregated data poses complex ethical, political, technical, and
social challenges. Many of the issues surrounding the secondary
use of health data are not new. These issues are however
increasingly critical and complex in light of public and private
sector activities that are expanding the volume of data
available to be used and the availability of tools to access
that health data. |
The lack of
coherent policies and practices for the secondary use of health
data presents a significant impediment to the goal of
strengthening the U.S. health system. A national framework for
the secondary use of health data that includes a robust
infrastructure of policies, standards, and best practices is
needed to facilitate the broad and repeated collection, storage,
aggregation, linkage, and transmission of health data with
appropriate protections for legitimate secondary use.
The report includes five (5) key recommendations:
- Recommendation 1: Increase
the transparency of data use and public awareness;
- Recommendation 2: Focus
ongoing discussions on data access, use, and control (not on
ownership);
- Recommendation 3a: Continue
discussions on privacy policy and security with regard to the
secondary use of health data;
- Recommendation 3b: Increase
public awareness efforts on the benefits and challenges
associated with the secondary use of health data;
- Recommendation 4a: Create a
taxonomy of the secondary use of health data;
- Recommendation 4b: Address
increasingly difficult current and evolving questions related
to the secondary use of health data in a comprehensive manner;
and
- Recommendation 5: Focus
national and state attention on the secondary use of health
data.
"The need for national
leadership in this area will be critical for gaining and keeping
the public's trust as electronic health records become more
prevalent," said Charles Safran, MD, MS, Past-Chairman, AMIA;
Associate Clinical Professor of Medicine, Harvard Medical
School/Beth Israel Deaconess Medical Center who spearheaded this
effort. "Patients do not know who has access to their data and
for what purposes. The expert panel learned of financial
incentives for sharing of patient data that raises ethical
questions and underscores the urgent need for further
discussions and development of appropriate public policy in this
area." stated Paul Tang, MD, AMIA Chairman.
Over thirty experts and key stakeholders from government,
industry, and academia participated in the meeting to produce
the report and its key findings and recommendations. A number of
organizations helped support the project including
GlaxoSmithKline, Lockheed Martin, Pfizer, GE Healthcare, IBM,
Intelligent Medical Objects (IMO), Medstat, and RemedyMD.
Remarks by David Brailer (as the National Coordinator for Health
Information Technology) and presentations from Doug Barton
(Lockheed Martin), Blake Caldwell (Centers for Disease Control
and Prevention (CDC), Nancy Davenport-Ennis (National Patient
Advocate Foundation), Stan N. Finkelstein (Harvard -MIT),
Melissa Goldstein (Markle Foundation, Connecting for Health),
Michael I. Lieberman (GE Healthcare), Eleanor Perfetto (Pfizer)
and Kevin Tabb (Stanford Hospital and Clinics) helped to shape
the discussions and findings.
For a copy of the report, visit the AMIA Web site at: http://www.amia.org/inside/initiatives/healthdata.asp
The American Medical Informatics Association (AMIA) is an
organization of leaders shaping the future of health information
technology in the United States and abroad. AMIA is dedicated to
the development and application of medical informatics in
support of patient care, teaching, research, and health care
administration. Complete information about AMIA is available at:
http://www.amia.org.
http://www.usnewswire.com/ |
