Help Find a Cure
Early last month, columnists Leslie Ann Fox, MA, RHIA, FAHIMA, and Patty Thierry Sheridan, MBA, RHIA, wrote about the impact of HIPAA on research (
Hands on Help, Dec. 3, 2007). They discussed the confusion that still surrounds the privacy regulation as it relates to research and how legitimate research requests are denied because of misinterpretation of the HIPAA privacy requirements.
Today, I read an essay in the New York Times by Andrew Vickers, a biostatistician at Memorial Sloan-Kettering Cancer Center in New York, that is saying basically the same thing. Vickers writes, "I'm sometimes told that sharing data would violate patient privacy-though changing names to codes is easy enough. Other requests are killed by red tape."
It's time to let researchers do their jobs. If we only shared all the information there is about the different cancers and treatments, don't you think we could start finding cures?
Vickers writes, "Given the enormous physical, emotional and financial toll of cancer, one might expect researchers to promote the free and open exchange of information. The patients who volunteer for cancer trials often suffer through painful procedures and harsh experimental treatments in the hope of hastening a cure. The data they provide ought to belong to all of us. Yet cancer researchers typically treat it as their personal property."
An article in the November-December 2007 Journal of AHIMA urges HIM professionals to address the inconsistency and misinformation around HIPAA. You are on the front lines of protecting patient privacy, but it is also your responsibility to educate those employees in your facility who may be erroneously blocking access to medical records when informed consents and HIPAA authorizations are properly executed. You can also be a resource to researchers when they run into barriers.
Step up and help contribute to finding a cure for cancer.