HIPAA Regulatory Alert

Survey: Americans worried about health info privacy

Most have favorable view of health information technology

A survey from the California Health Care Foundation finds that despite new federal protection, 67% of Americans still are concerned about the privacy of their personal health information and are largely unaware of their rights. Survey results also indicate many Americans may be putting their health at risk by doing things such as avoiding their regular physician or forgoing needed medical tests. And the survey found that a majority of consumers are concerned that employers will use their medical information to limit job opportunities.

Despite their concerns, consumers generally have a favorable view of health information technology and are willing to share their personal health data when those offer a benefit, such as improving coordination or safety of care.

"These findings will help inform and guide efforts to build a nationwide health information network," said foundation program officer Sam Karp at a news conference announcing the survey results. "Americans' privacy concerns pose potential barriers to realizing the significant benefits of health IT to improve health care quality, reduce medical errors, and lower health care costs. Without better education about their rights, strong privacy safeguards, and vigorous enforcement, the public's support for health IT may be in jeopardy."

The 2005 survey follows a groundbreaking 1999 study on medical privacy. Since the initial survey, national privacy protections have been implemented under HIPAA. The latest survey found that Americans continue to show high levels of concern about personal health information privacy. Ethnic and racial minorities (73%) and chronically ill populations (67%) show the most concern. The survey also found that 25% of consumers are aware of recent privacy breaches reported in the media. And of those who are aware of those incidents, 42% say the reports increased their concern about their own medical privacy.

While a majority of consumers (67%) have some level of awareness of federal laws that protect the privacy and confidentiality of personal health information, awareness of privacy rights varies with education and race, with ethnic and racial minorities the least likely to acknowledge or recall receiving notification of their privacy rights (60%).

More worried about what employers will do

The survey found that concerns about employer use of medical claims information has increased dramatically from 36% in 1999 to 51% in 2005. Ethnic and racial minorities (61%), the chronically ill (55%), older workers (51%), and people with less education (53%) were significantly more concerned that an employer would use medical information to limit their job opportunities.

"Although employers work to ensure that their health plans or third-party administrators always keep all medical claims data private and confidential, in line with federal and state laws as well as professional ethics, this survey suggests that we need to work harder and communicate more effectively to reassure employees and their dependents," said Helen Darling, president of the National Business Group on Health. "We need to demonstrate through frequent communications that trustworthy systems with many safeguards are in place to ensure that their records are safe and can never be used in ways they haven't authorized."

The survey found that one in eight consumers engage in behaviors intended to protect their privacy, including asking their physician not to record a health problem, going to another physician to avoid telling their regular physician about a health condition, and avoiding some medical tests. The chronically ill are more likely to risk their health over privacy concerns. Privacy protective behaviors also have increased for people with diseases such as cancer, diabetes, and depression.

"People should not have to sacrifice their health in order to shield themselves from job discrimination and loss of health benefits," Health Privacy Project director Janlori Goldman said at the news conference. "The large rise in people fearful that their medical information will be used against them on the job makes it imperative to expand the scope of health privacy law to cover employers."

Despite increased concerns about health care privacy, the survey found that most Americans (59%) are willing to share their personal health information when it is beneficial to their care or could result in better coordination of medical treatment.

The largest motivating factors for consumers to share their medical data are better treatment coordination (60%), enhanced coverage benefits (59%), and access to experimental treatments (58%). Consumers are most willing to share medical information with their regular physician (98%) or other physicians involved in their care (92%), but less willing to share with drug companies (27%) or government agencies (20%).

Download an executive summary and detailed survey findings from www.chcf.org.