Americans Have Acute Concerns about the Privacy of Personal Health Information

However, consumers are willing to share information if it benefits their health

This survey shows that despite new federal protections, 67% of Americans remain concerned about the privacy of their personal health information and are largely unaware of their rights.

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November 9, 2005

Despite new federal protections, 67% of Americans remain concerned about the privacy of their personal health information and are largely unaware of their rights. Moreover, many consumers may be putting their health at risk with such behaviors as avoiding their regular doctor or forgoing needed tests, according to the National Consumer Health Privacy Survey 2005. The survey, released today by the California HealthCare Foundation (CHCF), also found that a majority of consumers are concerned that employers will use their medical information to limit job opportunities.

Despite these concerns, the survey revealed that consumers have a favorable view of health information technology and are willing to share their personal health data when it offers a benefit, such as improving the coordination or safety of their care. For example, 65% of consumers recognize that computerization could potentially reduce medical errors.

"These findings will help inform and guide efforts to build a nationwide health information network. 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," said Sam Karp, chief program officer of CHCF, a nonprofit health care philanthropy based in Oakland, California. "Without better education about their rights, strong privacy safeguards, and vigorous enforcement, the public's support for health IT may be in jeopardy."

The new survey follows a groundbreaking 1999 study on medical privacy by CHCF. Since that time, national privacy protections have been implemented under the Health Insurance Portability and Accountability Act (HIPAA) and President Bush has pushed to adopt electronic medical records. The 2005 survey found that 67% of Americans continue to show high levels of concern about the privacy of their personal health information. Ethnic and racial minorities (73%) and chronically ill populations (67%) show the most concern. The survey also found that one in four consumers is aware of recent privacy breaches reported in the media. Of those who are aware of these incidents, 42% said the reports increased their concern about their own medical privacy.

Consumers Are Unaware of Their Rights

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

Increase in Concern about Employer Access to Medical Information

Additionally, the survey found that concerns about employer use of medical claims information increased dramatically since 1999 (52% in 2005; 36% in 1999). 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 professional ethics, this survey suggests that we need to work harder and communicate more effectively to reassure employees and their dependents," noted 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."

Consumers Are Practicing Privacy Protective Behaviors

The survey found that one in eight consumers engage in behavior intended to protect his or her privacy. These "privacy protective behaviors" -- 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 -- suggest some consumers are putting their own health at risk. The chronically ill are more likely to risk their health over privacy concerns. Privacy protective behaviors have also increased for people with certain 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," said Janlori Goldman, director of the Health Privacy Project and a research scholar at Columbia University's College of Physicians and Surgeons. "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."

Consumers Are Willing to Share Their Health Information for a Benefit

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 their medical information with their regular doctor (98%) or other doctors involved in their care (92%), but are less willing to share their data with drug companies (27%) and government agencies (20%).

Although consumers are more willing to share the medical information for a benefit, the survey found that 66% of consumers believe that health information stored in paper files is more secure, compared to 58% who believe electronic records are more secure.

An executive summary and detailed survey findings can be downloaded through the link below.

About the California HealthCare Foundation

The California HealthCare Foundation works as a catalyst to fulfill the promise of better health care for all Californians. We support ideas and innovations that improve quality, increase efficiency, and lower the costs of care.

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CHCF Communications Officer
California HealthCare Foundation