Americans Worry About the Privacy of Their Computerized Medical Records

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Americans trust their doctors and hospitals with confidential medical information, but fear disclosure when it is handled and stored by private health insurance plans or others. These findings are among the highlights of a recent survey of 1,000 Americans and another 1,100 California residents conducted for the California HealthCare Foundation by Princeton Survey Research Associates. The survey findings were released today at a statewide conference on the protection of personal health information, sponsored by the Foundation and Consumers Union.

“Given the complexity of the health care delivery system and the increasing use of new information technologies, the industry, collectively, needs to ensure that adequate safeguards are in place to protect the confidentiality of personal health information,” said Mark D. Smith, M.D., M.B.A., president and CEO of the California HealthCare Foundation.

Computerization Seen as Threat

Computerization of medical records is seen as the most serious threat to medical privacy, according to the survey results. Over half of all U.S. adults (54%) and California residents (52%) say the shift from paper record-keeping systems to computer-based systems makes it more difficult to keep personal medical information private and confidential. Most people consider electronic piracy — not disclosure of personal information by medical personnel, health plan officials, or other authorized users — as the bigger threat to privacy. Nationally, 55% say they worry more about computer hackers breaking into the system, while only 30% worry more about authorized users leaking information. In California, computer hackers are viewed as the number one threat by a margin of 58% to 28%.

Reluctance to Grant Access to Medical Records

While most people acknowledge that persons other than their immediate providers have access to their personal medical records, they display a strong preference to restrict access. When asked if they would grant access to various groups seeking permission, majorities say “no,” except in cases of medical research studies conducted by government or academia. Roughly six in ten would not be inclined to grant access to a hospital offering preventive care programs (60% of national, 56% of California adults) or to an employer who was considering them for a new job (61% and 60%). A clear majority (56%) of all U.S. adults and roughly half (52%) of California adults also would not grant access to a new health insurance company that might offer them better benefits at a lower cost. Americans are least willing to allow drug companies to have access to their medical records for the purposes of marketing new drugs and other health care products (70% and 68%, respectively).

Americans Express Trust in Health Care Providers; Little Confidence in Health Insurers

Health care providers get a strong vote of confidence from the public. Solid majorities of adults nationally (60%) and in California (62%) say they trust doctors, hospitals, and other health professionals to keep personal information confidential all or most of the time. There is, however, a pervasive distrust of private and government health insurers to keep personal information confidential. About a third of U.S. adults say they trust health plans (35%) and government programs like Medicare (33%) to maintain confidentiality all or most of the time.

Few Believe Improper Disclosures

Most people don’t believe their own medical privacy has ever been violated. When asked if they believe a health care provider, insurance plan, government agency, or employer has ever improperly disclosed personal medical information, only one in five U.S. adults (18%) and California adults (20%) say “yes.”

A comparison of the new survey results with those of a comparable 1993 Louis Harris survey for Equifax shows no evidence that violations of medical privacy have become more common over the past five years. In fact, reports of improper disclosure by health insurance companies (15% vs. 8%), public health agencies (10% vs. 4%), and hospitals (11% vs. 6%) are down significantly, compared to 1993 survey results.

Close to half the people affected by improper disclosure say it resulted in personal embarrassment or harm. In total, 7% of all U.S. adults and 9% of California adults say they have been personally embarrassed or harmed by a violation of their medical privacy. The segment of the population most likely to have been hurt are those who have ever used mental health services (13% of those in the U.S. as a whole and 14% in California).

Some Take Steps to Protect Medical Privacy

For the most part, Americans have not altered the way they interact with the health care system because of concerns about medical privacy. In total, 15% of national adults and 18% of California adults say they have done something out of the ordinary to keep personal medical information confidential. The steps people have taken to protect medical privacy include behaviors that may put their own health at risk or create financial hardships. These behaviors include: going to another doctor, or paying out-of-pocket (when insured) to avoid disclosure; not seeking care to avoid disclosure to an employer; giving inaccurate or incomplete information on medical history; asking a doctor to not write down the health problem, or to record a less serious or embarrassing condition.

In both the nation as a whole and in California, those who have experienced a breach of medical privacy are about four times as likely as others to say they have taken one or more steps to protect themselves. Among all U.S. adults, 38% of those reporting a breach of medical privacy have taken steps, compared with only 10% of those who have never had a bad experience. In California, the margin for these same two subgroups is 44% vs. 11%.

Most Unaware of Health Identifiers

In 1996, Congress passed legislation requiring the development of unique health identifiers—like a Social Security number—for all Americans. When told about the potential benefits as well as the risks in adopting a system of unique identifiers, 39% of the national survey respondents say they favor health identifiers while 52% are opposed. California respondents have a similar initial reaction—38% in favor, 50% opposed.

The survey results confirm that medical privacy concerns currently play an important role in limiting public support for unique health identifiers. Majorities of all U.S. adults (56%) and California adults (61%) say they are very concerned “there will be no effective way to prevent unauthorized access to sensitive personal information.” Americans and Californians overwhelmingly back new federal legislation to protect medical privacy (85% and 78%, respectively).

Adequate Safeguards Critical to Support Identifiers

To win public acceptance of a system of unique health identifiers, it is critical to have security provisions and information management policies in place to protect medical privacy. Many people initially opposed to unique health identifiers say they change their mind if proven safeguards for privacy were included in the system. When combined with initial supporters, these conditional supporters create a strong majority in favor of unique health identifiers both nationally (63%) and in California (64%).

Three specific policies to safeguard medical privacy are rated highest in effectiveness by Americans and Californians—establishing fines and punishments for violations of medical privacy (47% and 47%, respectively, “very effective”), requiring someone’s permission to release personal information (44% and 49%), and requiring providers to set up security systems like passwords and encryption (43% and 43%).

“The public understands that the world is changing. Yet this health information survey shows that people are more cautious about changes in important areas of their lives such as health care. While people are willing to accept change, they need good, reliable information to make them comfortable in these key areas,” Princeton Survey Research Associates Senior Project Director Larry Hugick said.

About the Survey

For this survey, Princeton Survey Research Associates interviewed a national sample of 1,000 adults, 18 years and older, in the continental United States and a separate sample of 1,100 adults in California. All interviewing was conducted by telephone between November 12 and December 22, 1998. For both the U.S. and California surveys, the overall margin of sampling error is plus or minus three percentage points for results based on the total sample. Results based on smaller subgroups are subject to a larger margin of error. In addition to sampling error, the practical difficulties of conducting surveys can also introduce error or bias to poll results.

About the California Health Care Foundation

The California Health Care Foundation is dedicated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford.