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National Consumer Health Privacy Survey 2005

Posted Oct 22 2008 9:32pm

National Consumer Health Privacy Survey 2005

Some of the more interesting results follow.  I've made a few comments about some of these in blue.

  1. Despite new federal protections, 67 percent of Americans remain concerned about the privacy of their personal health information and are largely unaware of their rights.
  2. 65 percent of consumers recognize that computerization could potentially reduce medical errors.
  3. 67 percent of Americans continue to show high levels of concern about the privacy of their personal health information. Ethnic and racial minorities (73 percent) and chronically ill populations (67 percent) show the most concern. Are these the Americans more likely to utilize more care services and/or at more acute levels?
  4. 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 percent said the reports increased their concern about their own medical privacy.
  5. Ethnic and racial minorities (60 percent) are the least likely to acknowledge or recall receiving a notification of their privacy rights. Are these the same individuals who are more concerned about the privacy of the personal health information?  (see #3)
  6. The survey found that concerns about employer use of medical claims information increased dramatically since 1999 (52 percent in 2005; 36 percent in 1999). Ethnic and racial minorities (61 percent), the chronically ill (55 percent), older workers (51 percent), and people with less education (53 percent) were significantly more concerned that an employer would use medical information to limit their job opportunities. Perhaps employers trying to keep and attract older workers (who tend to have more chronic disease) could address this item in their workplace effectiveness planning.  Also, Isuspect that the ethnic and racial minorities that have histories of being marginalized are the ones who are most concerned and the least educated on issues of personal health information privacy -- and this is a greater societial issue!
  7. 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. It sounds like privacy education with chronic disease populations needs to be a priority!   
  8. Despite increased concerns about health care privacy, the survey found that most Americans (59 percent) 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 percent), enhanced coverage benefits (59 percent), and access to experimental treatments (58 percent). Consumers are most willing to share their medical information with their regular doctor (98 percent) or other doctors involved in their care (92 percent), but are less willing to share their data with drug companies (27 percent) and government agencies (20 percent).    Does enhanced coverage benefits mean "access to care?
  9. Although consumers are more willing to share the medical information for a benefit, the survey found that 66 percent of consumers believe that health information stored in paper files is more secure, compared to 58 percent who believe electronic records are more secure.  These respondents must not have heard about the hospital in, uh, New Orleans, that disposed of its old medical records by dumping them in the garbage behind the hospital!  However, there are similiar (ugly) examples of how electronic records were accessible -- so we need to keep focused on security.

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."

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