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Americans Have Serious Concerns About E-Health Privacy, Says Survey

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Dec 8, 2006, News Report

According to a new survey commissioned by the Markle Foundation, Americans overwhelmingly want to have electronic copies of their medical records and believe that having greater access to their information will reduce medical mistakes and costly repeat procedures.

But eight in 10 Americans are very concerned about identity theft or fraud and the possibility of their data being used by marketers without their permission -- with three-quarters of those surveyed saying the government has a role in establishing privacy and confidentiality protections for electronic health information.

The findings will be released tomorrow at the Connecting Americans to Their Health Care conference in Washington, D.C. The second annual conference will focus on advances in personal health technology, with discussion of the critical role of patients and their families in efforts to modernize and reform health care.

"Americans understand that quality of care could improve and costs decrease when their health information is available over the Internet to them and those who care for them. And they are clearly ready to do their part to improve our health care system," said Zoe Baird, president of the Markle Foundation, which funded the research. "But consumers also have significant privacy concerns which must be addressed if we are to have sufficient consumer confidence to support a national commitment to electronic health records. People expect the federal government to establish rules that protect electronic personal health information from being used inappropriately."

The survey, conducted by bipartisan polling firms Lake Research Partners and American Viewpoint, shows that:
  • 97 percent think it's important for their doctors to be able to access all of their medical records in order to provide the best care
  • 96 percent think it's important for individuals to be able to access all of their own medical records to manage their own health
  • Two in three Americans (65 percent) would like to access all of their own medical information across an electronic network. This interest spans demographic groups -- with a majority (53 percent) of Americans 60 and older and high proportions of minority groups expressing interest
  • When given the scenario of changing doctors or moving to a different city, an even greater majority -- 84 percent -- said it would be important for them to have electronic copies of their medical records that they keep and control
  • Three-quarters of Americans are willing to share their personal information to help public officials look for disease outbreaks and research ways to improve the quality of health care if they have safeguards to protect their identity.
The survey shows that large majorities of Americans see a number of benefits from accessing their medical information online. Consumers say they want access to their medical information in order to ensure that it's accurate, to improve doctor-patient communications and to help prevent medical errors:
  • 91 percent say it's important to review what their doctors write in their chart
  • 88 percent say online records would be important in reducing the number of unnecessary or repeated tests and procedures they undergo
  • 82 percent want to review test results online
  • 84 percent would like to check for errors in their medical record.
"While the survey notes high recognition of the benefits made possible by accessing personal heath information electronically, most respondents express concern that their medical information could be misused:
  • 80 percent say they are very concerned about identify theft or fraud
  • 77 percent report being very concerned about their medical information being used for marketing purposes
  • 75 percent say the government has a role in establishing rules to protect the privacy and confidentiality of online health information
  • 66 percent say the government has a role in establishing rules by which businesses and other third parties can have access to personal health information
  • 69 percent say the government has a role in encouraging doctors and hospitals to make their personal health information available over the Internet in a secure way.
"Despite the overwhelming interest in being more active participants in their own health care, and having their medical information available online to themselves and their physicians, Americans have very serious concerns about the privacy and security of their medical information," said David Lansky, Ph.D., senior director of the health program at the Markle Foundation. "People want to have control over whether their data are used for non-medical purposes and expect the government to establish rules that will protect them."

KW

Comments

By Anonymous on Dec 11, 2006

The survey results of the concern over privacy did not suprise me at all. Our company created a product called HealthFolio which is a Personal Health Record that is stored on the privacy of one's computer. We are banking on the strategy that as consumers gain the trust of who is "warehousing" their patient data, they can at least create a PHR at home today, and then make the decision of whether they want to participate in a Regional Health Information Office initiative or direct their PHR to whom they want to share it with. The evolution is going to be like online banking, and getting the consumer to start developing a PHR now, will help in the development of a nationwide health information network. In fact the government should encourage PHR development by the consumer, by creating a tax deduction for using such a system. The solution to developing a NHIN is very complex, there is no silver bullet, but the consumer/patient CAN help solve the problem on an interim basis, by at least using a PMR system today.

By Anonymous on Dec 11, 2006

I strongly believe that patients should own their own electronic health records. Medical insurance companies should pay for their creation by doctors and for their maintenance by IT companies. As patients choose new doctors or change doctors, they change access privileges. Prior doctors continue to get access to old records in case they are needed. New doctors get access to all necessary records. Special rules may apply for government healthcare research and alerts (in case of epidemics). Insurance companies can see the records they need to see. Computer database techniques allow for such segmentation and partitioning to allow selective access. Together with patients' access to their own electronic health records, the Internet should be used for appropriate communication between the patient, the doctor, pharmacist and other health care professionals so that effective healthcare is rendered and received. Professionals should be properly compensated for such professional communications. I believe that total costs will actually decrease as people will solve some problems via Internet communications rather than an office visit.

By Anonymous on Dec 10, 2006

I think we have lost the privacy battle. Why not go for accountability. I want to know who accessed my records and when. Then I want laws in place to protect my access to my entire medical record. The people who have access to your data, by law HIPAA, have to account for disclosure. I want the disclosures delivered to me in real time so that I can secure my identity and rights under the law. Anyone today must realize that paper records are absolutely not private, so electronic records isn't the only problem. Thanks for the article, most informative.

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