Q & A: Patients Want Coordinated Care

Q: After switching doctors, I was surprised that I had to retrieve paper copies of my records. Weren’t patient records supposed to go digital?

A: Cancer patients and their caregivers see firsthand the problems we have in our healthcare system, not the least of which is how we transfer information from place to place. Patients, in transition from active cancer care to more routine follow-up in community settings, are particularly vulnerable when diagnostic and treatment data doesn’t flow easily from oncologists to primary care professionals.

Patients are beginning to recognize that they are caught in the middle of the muddle. A recent survey commissioned by the Center to Advance Palliative Care and supported by the American Cancer Society asked consumers what their biggest concerns were for patients with serious illnesses. A top issue was that doctors might not talk to and share information with each other—and these results aren’t surprising. Patients are letting it be known that from their perspective their care has become disjointed and uncoordinated as they move from place to place and doctor to doctor. The challenges are increasing as the ways in which we deliver care are morphing into new and more challenging systems.

Much of this was supposed to be addressed by expanding the influence of electronic medical records. Although there has been progress, it has been slow in coming. We still need widely accepted standards that allow different computer systems to use the same data—that way, test results could be easily available wherever the patient receives care, and scans wouldn’t have to be repeated. And, although the process of health information exchange is gaining traction, it may be some time before networks that will move patient information from one place to another, just like an ATM network, are up and running.

Until we arrive at that magical day when our treatment information follows us to where we get our health care, you must be your own advocate. Know your disease, know your treatment, and know what your healthcare team wants you to do and when you should do it. Keep copies of important records and even CDs of scans. If you don’t understand something, speak up and ask questions. No one is going to look out for you more than you do for yourself.

—Len Lichtenfeld, MD, is deputy chief medical officer for the American Cancer Society.