Access to Health Information
Sara Rosenbaum
June 29, 2009
Who Holds Health Information?
• Government
– Public payers
– Public health surveillance and regulatory agencies
– Public providers of educational, social, health care
services
• Private interests
– Hospitals, medical practices, other providers and
corporations, in medical, administrative, and business
records and repositories
– Consumers and patients, in personal health records
An Information Taxonomy
• Above and below the “surface of the water”
– Totally available to the public, no questions asked
• public use information developed by a government agency
from one or multiple information sources
• information that a health care provider either elects to or is
required by law to make available
• Information that an individual elects to make available (pretty
much nothing)
– Available with permission and for certain uses,
discretion exercised by information holder
• Data use agreements entered into with government or private
entities, at their discretion
– Absolutely positively never available
• Classified information except to authorized users
Major Policy Questions Related to the
Future of Health Information Use
•
What information should be publicly available?
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Interaction with federal and state privacy laws
Power of strong interests to keep much information out of the public eye, particularly the
price actually paid for treatments, items, and services
Should the government and/or private entities be incented to/required to enter into
data use agreements where certain information is concerned?
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If so, in what shape should the information be, in terms of usability and identifiers, when it is
made available?
Who has access to the information that is assembled from an inquiry covered by a DUA, and
for what purposes?
What information can be re-disclosed to the public once the results of the inquiry are
completed, and at what level of detail?
Can the results be published and are they free from prior restraint?
•
Who gets to make these decisions?
•
The answers will likely depend on whether the purpose of the inquiry is
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investigator-initiated research,
government evaluation of health system cost and quality
private operations