MEDICAL PRIVACY: Conferees Discuss Need For Protections

      Health care could suffer if public mistrust about the privacy of medical records is not mollified, according to health officials and consumer advocates gathered at patient confidentiality conferences around the state this week. "What we have found is, as the public's fear over loss of privacy grows deeper, people are likely to withhold information about their health from their health providers or, as bad, avoid seeking care altogether," said Sam Karp, chief information officer for the California HealthCare Foundation, which sponsored the conference along with Consumers Union. "At stake is the quality of care people receive and the integrity of information needed to improve clinical outcomes, quality assessment and accountability," Karp said. At five "Promoting Health/Protecting Privacy" workshops held throughout the state, conferees discussed the need to enact privacy safeguards before the federal government sets up a national health care database. Mandated under the 1996 Health Insurance Portability and Accountability Act, commonly known as the Kassebaum-Kennedy Act, the federal government will require the health care system -- from doctors to pharmacists to insurance companies -- to use the same computerized record- keeping system. And while the law requires Congress to come up with a set of privacy protections by August 1999, it directs the Secretary of Health and Human Services to issue regulations by February 2000 if Congress fails to act (CHCF release, 11/11).

Brave New World?
      Janlori Goldman, director of the Health Privacy Project at Georgetown University and a "key expert" who attended the conference, said, "People are worried we'll create a national database of health information before we have adequate privacy rules to say what can and can't be done with the data." According to Goldman, the Clinton administration is set to release guidelines directing the implementation of the health care database this year or early next year, but Congress has not yet passed privacy legislation. She said, "There are no federal rules that protect the confidentiality of medical records." The San Francisco Chronicle reports that the potential for abuse is considerable. At yesterday's conference in Oakland, conferees "worried that Immigration and Naturalization would tap into records to pursue illegals," and that "abortion-seekers would become targets for violence." San Rafael Planned Parenthood's Debra Titmus said, "Many women who have insurance pay cash for an abortion because they don't want to have a paper trail." Already, some groups are abusing medical information. Marketers sometimes use medical information to sell products. For example, some diaper companies have solicited pregnant women. But even more alarming, according to Goldman, is that some employees say they have been fired "after employers learned they were taking medication for depression or had other health problems" (Abate, 11/11). In addition, the San Diego Union-Tribune reported that others expressed concern that a national database would create an attitude of seeing "just the information -- not a person" (Dalton, 11/6).

Finding The Balance
      But despite the potential for abuse, many experts contend that a national database would improve consumers' health care. The Chronicle reports that computerized records "would be easier to find if patients move or change providers," they would aid in scientific research and help doctors to make more informed diagnoses (Chronicle, 11/11). "We must begin now to explore how promoting health and protecting privacy can go hand-in-hand," said the CHCF's Karp. "Among the questions we need to ask are, what use of medical information is appropriate, who should have access to medical information for these purposes, what is the minimum information needed to achieve legitimate health information gathering goals, and what protections and safeguards need to be in place?" Karp continued (release, 11/11). For more information, go to the Foundation's website at www.chcf.org.

Accountability
      In related news, the Joint Commission on Accreditation of Healthcare Organizations and the National Committee of Quality Assurance issued a report today urging the health care community to adopt a series of privacy safeguards. The organizations encourage policymakers and the health care community to ensure accountability by conducting periodic audits, educate patients about recorded health information, provide legislative support to ensure compliance, monitor health information disclosed to health service researchers, and incorporate technological resources to ensure confidentiality. Although accreditation standards already require that health care organizations secure patient consent for release of information, ensure confidentiality of patient records and incorporate confidentiality agreements into third-party contracts, JCAHO and NCQA will consider adding several accreditation requirements. NCQA President Margaret O'Kane said, "This joint effort will establish a framework that protects patient confidentiality, but still allows quality improvement and care management efforts to go forward" (NCQA release, 11/10). Click here to view the report on NCQA's website (www.ncqa.org), or click medical privacy to read past CHL coverage of the issue.