One patient's struggle to improve data sharing among specialty doctors

By Laura Lovett

When Amanda Greene goes to the doctor she is prepared. She has her iPad, email print-outs and her EHR login ready for the physician. Greene has multiple chronic illnesses and sees a variety of doctors for treatment. But there is no way for her different doctors to connect her medical records, forcing Greene to fill in the gaps.

“I’m not just a full-time patient but a full-time care manager,” Greene said.

Now Greene is telling her story at the HIMSS conference in Las Vegas this March. She said she was inspired to share her perspective after hearing other patients speak at last year's HIMSS conference.

“I”m looking forward to see how people attending HIMSS can improve the patient experience,” Greene said.

Greene was diagnosed with Lupus when she was 15-years old. At that point her mother figured out most of her care logistics. Now as an adult she has become an expert in navigating the convoluted system.

“Why can’t there be one electronic medical record per person?” Greene said. “I have to make sure all the doctors get all the information. Currently there is no way of simplifying it.”

The process can be frustrating. Recently she had blood drawn at one facility and then again, only weeks later, at another, due to a lack of communication.

Patients are often asked to describe their symptoms and treatment history, giving a “layperson's” account. This can lead to inaccuracies and missing pieces, according to Greene.

Greene said that often she is expected to act not only as the patient but also as a health expert. This can be especially problematic for patients who are struggling with long-term illness and spend a lot of time managing their health.

“Many patients are too busy managing [their] care to even think about if [their] doctors aren’t getting the right medication,” said Greene.

The lack of coordination between hospitals can also be difficult for patients newly diagnosed with a chronic illness who are less familiar with the complex process.

But it isn’t just folks with chronic illness that could benefit from more coordination; Greene said expectant mothers are another demographic who could be impacted.

For example, when a woman gets pregnant she may go to see an OB-GYN. But her internist has no access to these records, which could impact her health later. Information about birth complications is also essential for pediatricians treating the newborn.

Right now facilities are reluctant to send any files to other medical centers because if they do it for one patient they have to do it for others, said Greene. But she said she hopes for a connected system in the future that would save money and make the process easier for doctors and patients.

“I have one driver's license that works across the country," Greene said. "I have one social security number. Why can’t I have one medical record?”

Amanda Greene will be speaking in the session, “Tough girl on the Net: Connected Health: A patient narrative,” at 1 p.m. March 7 in the Venetian, Palazzo K.