In the wake of polls showing most Americans have privacy worries as their personal health data goes electronic, consumer groups want lawmakers to ensure that the ultimate control over medical records remains in the hands of the patient.
Congress is considering a proposal to build a national Health Information Network, but two patient groups — the Electronic Privacy Information Center in Washington and the Austin, Texas-based Patient Privacy Rights Foundation — told United Press International that the measure is still weak on privacy safeguards.
“There needs to be a firewall between employers and the medical information of its employee — I’ve seen mental health records used against people,” Dr. Deborah C. Peel, founder of Patient Privacy Rights Foundation, told UPI. “I’ve seen patients with sweaty palms, which many would not necessarily call shameful or disturbing, but it can be to that person, so we think the patient should decide what information should be shared.”
The groups say that the following protections should be included in the nascent health information network:
— The patient should determine who can see and use his or her medical records.
— The patient should not have his or her medical records seen or used by an employer.
— The patient should not be forced to give up privacy to get medical treatment.
Peel and Marc Rotenberg, executive director of EPIC, are also looking to Capitol Hill for help.
Rotenberg said the 21st Century Health Information Act, sponsored by Rep. Patrick Kennedy, D-R.I., is the only bill currently under consideration in Congress that allows people to opt out of being part of a national health database.
Patients have the option of allowing only designated healthcare providers to access their individually identifiable information concerning diagnosis and treatment of sexually transmitted diseases, addiction and mental illnesses.
“Our bill guarantees that individuals will be able to opt out of having their health information in health information networks. (It) requires that, for those who do choose to be in, they can restrict which providers see certain kinds of highly sensitive information; and (also) requires disclosures to Health and Human Services and affected consumers in the event of unauthorized access or other security breaches,” said Kennedy, a key supporter of health IT legislation in Congress.
“We need to ensure that the confidentiality and security safeguards are up to the challenges of an online, digital health environment. There are people who set up privacy vs. IT as if they’re in opposition — they’re absolutely not. IT can be much more secure than paper, but we need to make sure we’re building the protections in from the start.”
Health IT is the inevitable wave of the future, but reassuring a nervous public is a cornerstone to its success, the lawmaker said.
“Health IT can do away with that infuriating clipboard, save us the hassle and costs of unnecessary tests and procedures, and even save our lives,” Kennedy told United Press International.
“It can revolutionize healthcare, but only if Americans trust that their most sensitive personal information will be secure. There should be one simple principle embedded in any health IT legislation: Individuals control who sees their health information,” he said.
This year’s National Consumer Health Privacy Survey, conducted by Forrester Research for the California HealthCare Foundation, showed that one out of three Americans polled had privacy concerns as the nation moves to paperless medical records.
The survey also found that one in eight patients engages in behavior to protect personal privacy, such as asking their doctor to not record a health problem, going to another doctor to avoid telling their regular doctor about a health condition and avoiding medical tests.
The survey also found that one in four polled was aware of recent privacy breaches concerning credit-card information reported in the media.
However, despite their concerns, consumers generally had a favorable view of new health technology — 59 percent were willing to share personal health information when it could result in better medical treatment.