Researchers at the American Medical Informatics Association are requesting the United States Congress to allow them to see patient records without patient permission. To do this, they need Congress to make an amendment to the Central Federal Healthcare Privacy Rule.
Advocates are fighting back
This battle has been going on for over 10 years at the federal policy level. The advocates for patient privacy state that privacy means that each patient has full control over what happens to their medical information. Many advocates feel that researchers should have more than enough data to complete their research and that digging into patient medical records is completely unnecessary.
Patient privacy advocates also feel that if researchers want to use patient records for research purposes, they should take the steps necessary to reach out to the patients and get formal permission. The privacy laws that are currently in place for patients strictly forbid anyone but the patient, their healthcare provider and anyone the patient legally authorizes to gain access to their medical records. In the United States, patient confidentiality laws are taken very seriously and violations can come with strict penalties.
Origins of the request
The letter recently delivered to Congress has the recommendation of the entire American Medical Informatics Association, a team of researchers that is 4,000 strong. The letter is five pages long, and was delivered to Representative Fred Upton in Michigan.
Representative Fred Upton and Representative Diana DeGette of Colorado worked together to launch the 21st Century Cures initiative in May of 2014. This initiative promotes the use, in a secondary manner, of patient data to further various types of biomedical research.
The purpose of this initiative is to speed up how quickly researchers are able to find, develop and deliver promising new treatments to those who are in the greatest need. The research spans everything from better cancer treatments and cures for currently incurable diseases to genetics research.
Those who started the initiative feel that getting into patient records without permission will simply make the research process faster and easier. They feel that it will streamline the process and bring patients better treatment options sooner.
Exploring the wishes of the researchers
The American Medical Informatics Association wants Congress to make amendments to the Health Insurance Portability and Accountability Act of 1996. This is one of the most prominent and important federal health care and privacy laws to date. In 2002, this law was revised to allow certain entities to share patient medical records without patient consent for payment, treatment and other healthcare purposes.
At this time, the research organization wants to be added to the list of entities that are allowed the same permissions. If they are added, they will be able to obtain patient records and use them without the patient knowing.
We will keep you updated as this issue unfolds.
-The Alternative Daily
Sources:
http://www.modernhealthcare.com/article/20141126/NEWS/311269950/researchers-seek-medical-data-use-without-patient-permission
http://www.modernhealthcare.com/article/20101206/MAGAZINE/101209974
http://www.amia.org/sites/amia.org/files/AMIA-21st-Century-Cures-Comments-to-House-EC%20-%202014-10-15.pdf
http://energycommerce.house.gov/press-release/roundtable-and-white-paper-part-21st-century-cures
