eHealth consumer privacy forum begins an important discussion

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The Connecticut Health Policy Project and AARP- CT hosted a forum yesterday on electronic medical records at the State Capitol in Hartford – eHealth: Why Consumers Should Care. The purpose of the forum was to provide information about electronic medical records and to get input from advocates and consumers on privacy and security issues. The forum was well-attended and the audience had the opportunity to participate by asking questions and making comments. Speakers included Kevin Carr, MD, from Trusted Medical, Brenda Kelley of AARP-CT, and Ellen Andrews from the CT Health Policy Project.

The problems with the health care system in CT were discussed including quality lapses, rising costs, and increasing rates of chronic disease. 17% of Americans report that test results or medical records were not available at a medical appointment in the last two years; that rate is twice as high for low income as for higher income patients. The potential benefits of electronic health information include preventing medical errors, coordinating care, improving public health surveillance, reducing paperwork, improving efficiency, saving money, and making health care more affordable for everyone.

All speakers emphasized that consumers and their advocates have an opportunity to build CT’s health information system with security and privacy built in from the beginning. This forum is the beginning of a conversation, not an end. There is a great deal of both federal money and coordination coming to ensure that health information technology grows. All stakeholders, in CT and in Washington, are welcoming, even seeking, consumer input into the design of systems.

Dr. Carr described electronic medical records and showed a few examples so the audience could see what they look like. He showed a fictional electronic medical chart for a patient with allergies and a list of what medications the patient is taking. Dr. Carr emphasized that electronic health records put patients at the center of health care. The purpose of sharing health information through electronic medical records is to improve medical care.

The audience was very involved in the discussion by asking questions and sharing their concerns. Vicki Veltri, General Counsel for the Office of the Health Care Advocate, was very concerned about medical records being sold to insurance companies and thought this should not be allowed to happen. Dr. Carr said that they would follow the rules established for the governing body of the Health Information Exchange.

Shawn Lang, from the CT AIDS Resource Coalition, asked about how patients with HIV could control the sharing of information. Dr. Carr responded that this needs to be addressed in CT. In other states, the information might only be released to a primary care doctor. If the patient doesn’t want to share it with other doctors he or she can opt out of showing that information.

Jill Zorn, from the Universal Health Care Foundation, asked who owns the medical record because most doctors’ offices think that they do, but ideally the patient would. Dr. Carr answered that the data in the system is seen as belonging to the providers. When the information is being exchanged (between doctors) it becomes the patient’s and it is under the patient’s control.

The CT Health Policy Project has developed a resource page on our website for advocates to follow and join the discussion. It includes a glossary of terms.
Jen Ramirez and Ellen Andrews