Americans’ top concern about electronic health records (EHRs) is the potential misuse of their personal data, according to a national survey conducted on behalf of the Markle Foundation. Respondents were asked how concerned they would be about the following matters if an online network provided people with access to their medical information:

• Identity Theft: 92 percent (80 percent very concerned; 12 percent somewhat concerned).
• Access by Marketing Firms: 89 percent (77 percent very concerned, 12 percent somewhat concerned).
• Access by Employers: 74 percent (56 percent very concerned; 18 percent somewhat concerned).
• Access by Health Insurers: 79 percent (53 percent very concerned; 26 percent somewhat concerned).

Are these concerns unfounded? The Wall Street Journal recently reported that the Department of Health and Human Services (HHS) fielded 23,896 complaints related to the medical-privacy rule between April 2003 and November 30, 2006. However, HHS has not taken any enforcement action against hospitals, doctors, insurers, or anyone else for rule violations, according to the Journal.

The Journal also reported a case involving disclosure of a woman’s psychotherapy notes without her permission. Patricia Galvin sought psychotherapy at a hospital for issues relating to relationships with family, friends, and coworkers. Several years later, when she sought disability benefits for chronic back pain resulting from a car accident, her insurer turned her down, citing information from her psychologist’s notes. She was appalled to discover that her notes were mixed in with her general medical records. The federal medical privacy rule allows the disclosure of medical records without permission for activities related to treatment, payment, or health-care operations; there is no special protection for psychotherapy notes that are combined with medical records. Last summer, HHS rejected the complaint filed by Ms. Galvin, saying the hospital where she sought psychotherapy hadn’t broken any rules.

Meanwhile, Americans stress that they want access to their own electronic records. The Markle Foundation survey found that:

• 91 percent say it is important to see what their doctors put in those records to ensure that they understand the patient’s situation.
• 84 percent want to be able to access their records to check for mistakes.
• 84 percent said that when switching doctors they would want electronic copies of their medical records.

The Markle Foundation report concludes, “These survey results indicate most Americans are interested in accessing personal health information electronically and in ensuring that their health care providers have access to their information. Majorities express strong interest in using electronic personal health information to engage more and have more control over their care, which could affect both the quality of care they receive and the overall cost of health care. Yet, data suggest this interest is contingent on the extent to which the government and others establish sufficient privacy and confidentiality protections.” The survey among 1,003 Americans nationwide was conducted by Lake Research Partners (LRP) and American Viewpoint between November 11 and 15, 2006.

Sources:

• “Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care,” Markle Foundation, December 7, 2006: http://www.markle.org/downloadable_assets/research_doc_120706.pdf
• “Medical Dilemma: Spread of Records Stirs Patient Fears of Privacy Erosion,” by Theo Francis, Wall Street Journal, December 26, 2006.