At 70, Terri Koopman knows she has a lot of medical baggage.
Doctors from Miami to her Lake Placid home have treated Koopman for cancer, arthritis and everything in between. The retired nurse can share a lot of the details, but wonders what happens if she is hurt and can't speak.
"There's got to be a way to know short of tattooing it on my forehead," she said.
Like doctors, patients have the right and ability to create and store their own personal health records online, on flash drives or on paper, said Julie Dooling, director of professional practices at the American Health Information Management Association.
It's not the recent federal push asking doctors and hospitals to maintain electronic records that made the information available to patients. The 1996 Health Insurance Portability and Accountability Act, or HIPAA, guarantees patients can access, view and receive copies of everything from lab results to doctor's notes.
"It will help make your doctor visits easier," Dooling said.
What has changed is the recent availability of computer software and online patient resources offering to help organize medical information. Just as doctors are seeing a boon in medical record software for their offices, patients are being deluged with free and fee-based products called personal health records.
Dooling and others warn that the products available are not equal. Some, such as those operated by insurance companies, may be available only while you're a client. Others sell data to a third party such as a prescription drug company.
"We know personal health records are a valuable tool ... but read the small print," said Joyce Dubow, senior director for health care reform at AARP. "Not all personal health record products are the same."
Dubow said some patients think a records request is tantamount to challenging a physician's credentials. Patients, especially those who regularly see multiple providers, should get some kind of summary at the end of every doctor's visit, she said. It can be on paper, shared through a secure online website or burned on a CD-ROM.
"Some people worry they're antagonizing their doctors ... but the reality is that the engaged patient is more likely to be safe," Dubow said.
Tampa orthopedic surgeon Mike Wasylik wants his patients to review reports. Although some of the language may be foreign medical jargon, patients will be able to spot if he or his staff made clerical errors.
"It's good if the patient sees the record," Wasylik said. "We want the record to be right."
However, Wasylik said he wishes more patients would go electronic. He has offered reports on a password-protected patient portal for two years but still gets a lot who ask for information on paper. Now, only those without access to a computer get printed reports.
"We had to change our policy because no one was using the portal," Wasylik said.
The policy is a sign of changes patients should begin to expect, Dooling said. That's why patients need to be informed about how and where their electronic medical data is being shared.
HIPAA requires health care providers to ask permission before they share patient health records. That won't change as medical records evolve electronically, Dooling said.
"Work on knowing your rights," she said.
For information about creating a personal health record, visit www.myphr.com.