The American Medical Informatics Association repeated its call for more principles regulating the use of health data for purposes not directly related to patient care and for more transparency regarding those secondary uses.
Toward a National Framework for the Secondary Use of Health Data is the title of a white paper that AMIA released last fall and just published in the January/February issue of its publication, the Journal of the American Medical Informatics Association. The paper was generated from discussions held at an April 27-28, 2006, meeting of 36 electronic medical-record industry representatives.
"It's sort of an awareness-building exercise as well as a call for more principles," said AMIA Chairman Paul Tang, vice president and chief medical information officer for the Palo Alto (Calif.) Medical Foundation. "I think the main point of the paper is that there is a dramatic increase in the amount of consumer and patient information being used outside of what are known -- in (Health Insurance Portability and Accountability Act) terminology – as 'covered entities,' which are health plans, healthcare clearinghouses and healthcare providers. The paper is calling for a discussion on policies that currently don't exist for all uses outside of the intended purpose: taking care of a patient."
Tang said that while there may be a need for more principles directing secondary uses of data, he would not want to unnecessarily hinder legitimate purposes such as public-health reporting, biosurveillance and medical research.
To this end, the AMIA white paper makes the following recommendations:
• Increase transparency of data use and promote public awareness.
• Focus ongoing discussions on data access, use and controlnot ownership.
• Discuss privacy policies and security for secondary use of health data.
• Increase public awareness of benefits and challenges associated with secondary use of health data.
• Create a taxonomy for secondary uses.
• Address comprehensively the difficult, evolving questions related to secondary uses.
• Focus national and state attention on the secondary use of health data.
"I think it's clear consumers, patients and physicians don't always know what is going on with their individual data or that people are profiting by selling their data," Tang said.
While noting that there has been "no overt resistance" from data-miners to AMIA's proposals, Tang said, "I suspect there are folks under the radar who would like to continue what they're doing."
He added that the issue has "lost some good will with the public" because of all the security breaches in the news and that the public is also wary of the promotion of electronic personal health records by employers and health plans.
"The very people that are trying to motivate people (into using PHRs) are the very people folks are concerned about," Tang said. "They're afraid of not getting or losing a job or not getting or losing insurance."
At least one privacy advocate, however, thinks AMIA's effort will do little to ease patients' concerns.
Despite the presence of Nancy Davenport-Ennis, president of the National Patient Advocate Foundation, at the AMIA meeting, Deborah Peel, the founder and chairwoman of the Patient Privacy Rights advocacy group, called the group that developed the white paper an "all-industry panel" without consumer representation. Peel also took issue with the appearance of former National Coordinator for Health Information Technology David Brailer at the AMIA meeting last April -- which was supported, in part, by GE Healthcare, GlaxoSmithKline, IBM Corp., Medstat and Pfizer.
"By appearing at this all-industry panel, David Brailer demonstrated what he and the (Bush) administration really want from the electronic health system: unlimited corporate and government access to the most sensitive and valuable information that exists about all 295 million Americans -- our medical records," wrote Peel, a psychiatrist from Austin, Texas, in an e-mail to Health IT Strategist.
Peel especially took issue with how the paper discussed the possible sale of patient data as a potential way of supporting regional health information organizations. Although this business model was not endorsed in the paper, it was not condemned either.
"The AMIA white paper discussed funding RHIOs and the (National Health Information Network) by selling patient data," Peel said. "That is like asking your daughter to be a streetwalker to pay for her wedding."
Read more about the AMIA effort here.What do you think? Write us with your comments at [email protected]. Please include your name, title and hometown.