[Med-privacy] more on TRUST Act and PHRs

[peter marshall]

On February 14, 2008, Representative Edward Markey (D-Mass.) and
Representative Rahm Emanuel (D-Ill.) sponsored a bill that aims to
promote information technology (IT) while protecting patient privacy.
The Technologies for Restoring Users' Security and Trust (TRUST) in
Health Information Act has been endorsed by several groups, including
Patient Privacy Rights, the American Association of Practicing
Psychiatrists, and the National Association of Social Workers.

The TRUST Act will enable patients to exercise greater control over
their health information data and enjoy better security. In particular,
it allows patients to keep their medical records out of the IT systems
unless they consent to it, it requires that patients be notified in case
of databank and record security breaches, and requires the use of
encryption and other security technology for the information collected.
Violations can result in civil or criminal penalties.

Representative Markey has stated, "The spread of health IT holds
tremendous promise for improving patient care, reducing medical errors
and lowering costs. But this dream could quickly turn into a nightmare
for consumers without sufficient privacy and security safeguards to
protect personal medical records from unauthorized access."

Previous health IT bills, which are still pending, did not adequately
address the privacy problems with the current regulations, according to
patient privacy advocates. In October 2007, the Coalition for Patient
Privacy called on Congress to refrain from passing health IT legislation
that did not protect health information privacy.

In a recently released report, the World Privacy Forum highlighted the
privacy risks associated with personal health records, which are health
records for consumers that are often made accessible online and
comprised of data collected from a variety of sources. Personal health
records are considered a new convenience technology but many fall
outside the purview of the Health Insurance Portability and
Accountability Act and can threaten patient privacy.


Press Release - Representative Markey's homepage:

      http://epic.org/redirect/rep_markey_trust.html

TRUST Act, HR 5442 (PDF):

      
http://www.patientprivacyrights.org/site/R?i=Uc741EjZjpsaqvZv2ZgMbA..

Patient Privacy Rights:

      http://www.patientprivacyrights.org/site/PageServer

World Privacy Forum Report - Personal Health Records: Why Many PHRs
Threaten Privacy (PDF):

      http://www.worldprivacyforum.org/pdf/WPF_PHR_02_20_2008fs.pdf

EPIC's page on medical privacy:

      http://epic.org/privacy/medical/

[EPIC]