The American public's growing fear that Big Brother-or more likely a current or potential employer-might get their hands on private medical records is creating a barrier to the federal government's goal of moving healthcare from the paper to the electronic age.
If the public doesn't think the computer databases holding their highly personal medical histories are safe from prying eyes, the investment in the costly technology needed to implement electronic medical records may be slowed or stymied.
"We can spend and spend and spend," but without public support and confidence, "health IT can only go so far," says Bradford Holmes, healthcare researcher for Cambridge, Mass.-based Forrester Research.
Holmes made his remarks while announcing the results of a California HealthCare Foundation-sponsored survey conducted
by Forrester on consumer attitudes toward medical privacy at a news briefing last month in Washington.
The nationwide telephone survey of 2,100 adults, conducted over the summer, indicates that consumers are aware of the benefits of electronic medical records but are concerned about misuse of the information and are generally unaware of their rights regarding it. A similar survey was conducted in 1999.
And despite some encouraging news, there are indications that public perceptions may derail efforts to use technology to make healthcare delivery better, cheaper and more efficient. Several recent examples of stolen or misplaced medical data may be feeding those perceptions.
Two-thirds of respondents say reports of computer security breaches have raised their concerns about privacy; 52% worry about employers using medical information to limit job opportunities (up from 36% in the 1999 survey); and 13% (compared with 15% in 1999) say they have practiced some form of "privacy protective behaviors."
These behaviors included asking a doctor not to record a health problem, avoiding their regular doctor for certain conditions, paying for a test or procedure instead of filing an insurance claim, or deciding not to be tested out of fear others might learn the results.
Such actions by roughly one in eight adults can have far-ranging impacts, says Emily Stewart, a policy analyst with the Health Privacy Project, an advocacy group. For people who choose not to get tested for HIV/AIDS, sexually transmitted infections and other communicable diseases, "They're jeopardizing not only their own health, but also the health of communities," Stewart says. "Also, quality-improvement organizations depend on quality data. If one in eight people are doing things that jeopardize that data, it has a domino effect and could jeopardize the healthcare system in its entirety."
Camille Orso, the chief privacy officer for 44-hospital Trinity Health, Novi, Mich., agrees. "It certainly is an area of concern, because it could result in harm to patients because there could be information missing that is necessary for treatment," she says. She adds that these cases "could also undermine provider confidence" in the information available to them in an electronic medical record.
In general, the survey found that, the more familiar people are with the healthcare system, the more likely they are to appreciate EMRs. Respondents who had been diagnosed with a disease had a more positive attitude toward sharing their medical information than those who had not been diagnosed. "People in the system who know what it's like to get badly coordinated care say, 'I'd like that if you could give it to me,'" Holmes says.
Nevertheless, only 58% thought computerized records were secure compared to 66% who thought paper records were secure.
Health Privacy Project Director Janlori Goldman spoke at the briefing and said concerns are exacerbated because the public is generally unaware of its rights as defined by the 1996 Health Insurance Portability and Accountability Act.
She said part of the problem is that HIPAA notices are not written to enhance public understanding of the law and that the Bush administration does not appear committed to promoting the law.