People Can Opt Out of Listing STDs, Abortions in Gov't-Mandated Electronic Health Records, Patrick Kennedy Says

By Nicholas Ballasy | September 25, 2009 | 5:46 PM EDT

Rep. Patrick J. Kennedy (D-R.I.)

( - Rep. Patrick Kennedy (D.-R.I.) says people will be able to stop doctors from including records of sexually transmitted diseases and abortions in the new national system of Electronic Health Records that was mandated by the stimulus law enacted in February.
The law says that doctors, hospitals and other health care providers must create an Electronic Health Record (EHR) for every American by 2014 or else face deductions in their Medicare payments. The EHRs are supposed to be integrated into a national health care IT system where health-care providers nationwide as well as the government would have the ability to access them when authorized.
“This is totally going to be up to the individual,” Kennedy told when specifically asked if these EHRs would include any STDs or abortions in a person's medical history.

Title XIII of the stimulus law provided for “the development of a nationwide health information technology infrastructure” that would include “the qualified electronic health record” of “each person in the United States by 2014.”
The law specifically says that this “means an electronic record of health-related information on an individual that -- (A) includes patient demographic and clinical health information, such as medical history and problems lists; and (B) has the capacity -- (i) to provide clinical decision support; (ii) to support physician order entry; (iii) to capture and query information relevant to health care quality; and (iv) to exchange electronic health information with, and integrate such information from other sources.”
These records--including a person’s “medical history and problems list”--must be put into a national system that allows for “the electronic linkage of health care providers, health plans, the government and other interested parties to enable electronic exchange and use of health information among all the components in the health care infrastructure in accordance with applicable law,” says the law.

The law further requires the secretary of health and human services “to improve the use of electronic health records and health care quality by requiring more stringent measures of meaningful use over time,” according to an explanation of the law published by the House Appropriations Committee in February. 

Nonetheless, Rep. Kennedy says individuals will be able to opt out of having doctors and health care providers list any STDs or abortions they have had.

By contrast, Rep. Michael Burgess (R-Tex.), who is a doctor, said completeness may be required in the electronic health records for both clinical and liability reasons. 

“This is totally going to be up to the individual,” Kennedy told last when asked whether the records would have to include any STD or abortion a person might have had.

“So, obviously, for the full effectiveness of the person, it’s to their benefit to have everything on a record, but it’s going to be totally up to the individual,” said Kennedy. “We’re not going to get people to fully buy into this if they don’t feel comfortable with the record--and the one way to not make them feel comfortable with the record is to force everything on them and say, ‘This is a mandate, you’re going to have to do this or that.’ Because if that happens, then people aren’t going to want to buy in and the system’s not going to work.
“So what’s going to happen is this is going to be someone’s--people’s opportunity to choose, because they are going to know there are safeguards, and  I think over time they are going to get more and more comfortable that this is in the best interest of them and their personal health,” said Rep. Kennedy. “But absolutely, we are going to make sure that’s it’s all up to the individual, because we are not going to get widespread adoption if people don’t feel that their privacy is protected. Privacy is the cornerstone of making sure this thing works.”
Ashley Katz, executive director of Patient Privacy Rights, a non-profit health privacy watchdog group, agreed with Kennedy about the importance of protecting the privacy of electronic health records but said that electronic health records as currently used are not generally designed to allow people to exempt parts of their medical history.

“I agree that privacy is the cornerstone of health care and ultimate adoption of electronic health records,” said Katz.  “It is assuring to hear that the congressman’s intent is to ensure people can choose what information would go into an EHR versus mandating all data be dumped in without a patient’s consent.”  

“However, most electronic health records today are not designed or used to allow people to make informed choices,” said Katz. “There is tremendous opposition by industry to allowing this kind of patient choice, and industry has a powerful influence on policy.  We continue to hear that letting a patient segment or block sensitive information from going in to an EHR and allowing a patient to have control over who can see and use their information is too complicated and not worth doing.  We wholly disagree.  Patient control is essential with EHRs.”
Katz also said there is no language in the stimulus bill that says a patient can prevent something like an STD from appearing on their electronic health record. 
“The Health Insurance Portability and Accountability Act (HIPAA) allows a doctor to use/share the information for any purposes that fall under ‘treatment, payment, and health care operations’ without the patients request,” she told
“It actually says that the patient may request a restriction, but the provider does not have to comply with that restriction. It’s a toothless ‘right,’” said Katz.
“The American Recovery and Reinvestment Act [ARRA, the economic stimulus law] included a provision that would require a provider to not share information with a health plan, if the patient requested it and if they paid in full out of pocket,” said Katz.  “The ARRA requires a policy committee to consider how to allow patients to segment sensitive information but there is nothing in the actual law that says you have this right.”

Rep. Michael Burgess (R-Texas), a physician, drew a distinction between putting information in the record and actually having a person’s physician release that information to a third party.  But health care providers, he said, need to know everything about a patient’s medical history.

“I think it should be up to the patient to decide what information is released,” he said. “The patient, of course, is the one who’s ultimately getting control of devoting that information to their doctor.” 

“If they release that information to be shared with whoever requests the sharing of information, I think the patient is going to be aware of that,” Burgess told  “Again, my perspective is different and it’s more from the standpoint of a provider. I think providers do need to have that information. If I refer a patient to a specialist, yeah, that information needs to go along. It is not only unfair, it is probably a liability on my part if I did not disclose that information to the physician to whom I am referring a patient.”

Rep. Burgess and Ms. Katz told that it is still unknown how information about a patient will be put into the electronic health database.

“I think that’s still mostly unknown,” Katz told  “But usually it starts with the encounter at the doctor’s office.  Also, all the prescription data is/has been collected every time you get your prescription.  Most of these systems still don’t talk to each other (not interoperable) and there is plenty of debate over how to make a ‘national’ system.”
Kerrie Bennett, Rep. Kennedy’s press secretary, was not available to answer’s follow-up questions.