The Senate's eagerness to mandate incentives for modernizing healthcare through information technology has prompted concerns about enacting a law without adequate privacy protections.
Psychiatrist Deborah Peel, founder of the Patient Privacy Rights Foundation, has alerted her coalition of nearly 40 organizations, including the American Academy of Family Physicians and the American Medical Association, to call the sponsors of a pending bill, S. 1693, about adding a privacy amendment proposed by Patrick Leahy, D-Vt.
Peel maintains that the legislation was almost and soon may be "hotlined," a procedure used to expedite passage under unanimous consent, without debate. She said the bill relies too heavily on privacy standards promulgated under a flawed 1996 law, the Health Insurance Portability and Accountability Act, in covering non-medical entities like data aggregators.
An aide for the Health, Education, Labor and Pensions Committee, acknowledged that there is a need to reform health privacy rules but said now is not the time. The strain of deliberating reforms would slow the bipartisan effort to improve access to health care through technology, reduce medical errors and lower costs, he said.
The legislation would require that patients be notified if their data is wrongfully disclosed, establish grants for providers to buy health IT systems, and help fund regional and local health information exchanges.
Leahy is working to attach an information privacy amendment to the bill that would give patients the right to revoke third-party access to their records, opt out of any electronic system, and limit access to certain information to only a subset of authorized recipients.
An aide for Leahy said he has received positive feedback from HELP Committee chairman Edward Kennedy, D-Mass., and ranking Republican Michael Enzi of Wyoming. The HELP aide said that Kennedy is still in discussions with other senators.
Enzi spokesman Michael Mahaffey said "the health IT bill, should it be hotlined, is a classic example" of an issue that "has been thoroughly debated by all senators involved." The HELP aide said that patient organizations like the National Partnership for Women and Families would not be backing the bill fervently if it did not provide sufficient privacy protections.
Sabrina Corlette, the partnership's health policy programs director, said "the bill is not perfect," but "good healthcare depends on the exchange of healthcare information."
The committee aide noted that the bill would strengthen safeguards by mandating that every health IT system receiving funding keep an audit trail. Ultimately, he added, it may be the case that e-health records are even more secure than paper records, which are not auditable.
But Peel pointed out that "with a paper system, an occasional person could masquerade as a member of a staff ... and sneak in and make a copy of a single chart. ... On the other hand, electronic records can be disclosed to millions of entities across the globe in a second. The sheer and stupefying scale of the ability to violate privacy using electronic records is unprecedented."
Corlette noted that a huge data leak "is a risk today," and the bill "does not add to that risk, I don't think."