Peel: Privacy and health research can co-exist

By Deborah Peel
01:00 AM

Some health care professionals are concerned that medical privacy is hindering health care research ["Hidden keys to health," Government Health IT, Feb. 13, 2006]. Nothing could be further from the truth.

Deborah Peel We don't have that much medical privacy to begin with.

As a practicing psychiatrist, I would like nothing more than research that looks longitudinally at thousands of people with depression to learn what medications are best for treating someone after 10 to 15 years. Studies that track thousands of people over many years will be one of the greatest benefits of having a national electronic medical record system.

But that kind of research does not require knowledge of patients' names. The vast majority of legitimate research can be conducted using aggregated data that doesn't include patients' names, addresses or Social Security numbers.

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To protect our medical privacy, technology now provides the tools to segment our most sensitive medical information. It also allows the sharing of aggregated health information for research to improve health care. Privacy and research can benefit from technology. It's not an either/or proposition.

If we are smart and we care about sound scientific medical practices, we will build patient-controlled access to medical records into the network. That will ensure that information in the electronic medical record is accurate and reliable.

Why?

If people believe they do not have medical privacy, they will lie about their medical illnesses or omit mentioning critical tests and details rather than have the information flow to any number of health-related businesses. Such firms are allowed under the Health Insurance Portability and Accountability Act (HIPAA) to receive medical information about patients without their knowledge and consent.

How can that be?

Our existing federal privacy law is toothless. The federal government amended HIPAA in 2003, allowing more than 600,000 types of businesses and millions of their business associates to access medical records without patient consent for the "treatment, payment and operations of health-care related activities."

To argue that medical privacy will result in higher costs and obstruct research is simply wrong. How can anything possibly be private with this type of loophole?

Americans need and want the benefits that can come from lifelong, electronic medical records that allow the gathering and sharing of anonymous medical data to improve health care for all.

But Americans must have medical privacy protections to trust a high-tech national health system. There's no reason we can't have both.

Peel is a psychiatrist and president of the Patient Privacy Rights Foundation in Austin, Texas.

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