In a letter sent to Rep. Fred Upton (R-Mich.), chairman on the committee on energy and commerce, the American Medical Informatics Association calls for increased data sharing to improve access to health data by changing HIPAA regulations.
Currently, the letter states, covered entities such as physicians, hospitals and payers are permitted to use protected health information without obtaining specific consent of the individual for "routine activities" within healthcare operations. However, the letter states, observational or data research (non-interventional) is not considered a healthcare operation.
According to the letter, the majority of hospitals, providers and other covered entities believe health data can only be used for studies relating to their own institution and that PHI cannot be used for research purposes unless each individual patient gives their consent. "As a result, vast troves of clinical and high-volume molecular data are effectively siloed within thousands of healthcare facilities and organizations and not used by either CEs or their business associates conducting research activities…for research that could contribute to the discovery, development and delivery of new treatments and cures," reads the letter.
AMIA recommends Congress should consider amending HIPAA's definition of healthcare operations to include non-interventional research as an appropriate use of PHI and should hold a multi-stakeholder working group to discuss issues of impeded data movement, among other security and privacy considerations.
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