JAMA Article Prescribes Public Ownership of Patient Data

7/1/2009

The advent of the electronic medical record has the potential to launch a new era in public health and patient safety by allowing researchers and public health departments to easily call up data about dangerous side effects of drugs, contagious diseases and therapeutic efficacy. Yet the potential benefits for patients and the public health are being held hostage by private firms that treat patient data as if it were their private property, according to Suffolk University Law School Professor Marc A. Rodwin, writing in the July 1, 2009, issue of the Journal of the American Medical Association

Data could benefit public health

Rodwin argues that federal law should require that certain medical data – stripped of all identifying information to protect patient privacy—should be reported to a federal agency for public use. Such data could be used to warn the public about dangerous pharmaceutical products, compare the quality of medical facilities, and improve public health monitoring and medical knowledge.

The law does not make patient data the exclusive property of patients, medical organizations, or any other party, and it does not allow copyright of patient data, according to Rodwin. 

Organizations profit from patient data

Nevertheless, hospitals, insurers, and others now sell aggregate patient data to Medical Information Organizations, which resell it to third parties.  One firm earned more than $2 billion selling medical data in 2006, according to Rodwin’s JAMA article.  These Medical Information Organizations employ contracts and software to limit data access to those who pay them. 

Rodwin warns that “if legislation does not create an alternative framework, courts might enforce these contracts, and thereby limit the benefits of patient data.” 

“Patients supply the information. Data are collected because patients and the public finance medical care through fees, insurance premiums, and taxes,” writes Rodwin. Therefore, the public has a strong claim to the aggregate data.

$19B boost for e-records

Adoption of the electronic medical record had lagged due to cost and privacy issues, but Congress has allotted $19 billion for this purpose. As electronic medical records become more commonplace, aggregate patient data become available.  But despite federal funds making this possible, private parties seek to profit from the data at the expense of patients and the public, Rodwin maintains.

Rodwin calls on federal policy makers to require that clinicians and medical institutions submit patient data to the Department of Health and Human Services so that it may be used to “vastly improve patient safety, public health monitoring, and medical knowledge.”

Back to News »

CONTACT US

Greg Gatlin
617-435-3634

Mariellen Norris
617-573-8450