We know there is a surge of interest in using electronic health records to help you get better health care, and also to help healthcare administrators evaluate decisions and outcomes of patients. The federal government will be using Big Data (accumulation of electronic records) to look for best ways of treating patients and how research advances are being implemented in practice. In cancer care, the American Society of Clinical Oncology (ASCO) will be using electronic records to identify successful approaches to medical care (CancerLinQ, with over 170,000 breast cancer patient records accumulated so far).
In America, the 41 best cancer centers have been named, by the National Cancer Institute, as Comprehensive Cancer Centers. From that list, 25 centers have formed the National Comprehensive Cancer Network (NCCN). Each cancer patient's care has been helped by the NCCN organization. NCCN has developed guidelines for the diagnosis, evaluation, treatment and survivorship of every type of cancer. You can see these guidelines on their website.
In most situations with individual patients, these NCCN guidelines can be used to develop the treatment plan that surgeons, radiation oncologists and medical oncologists follow so that every patient receives care that makes use of the most recent advances. Meticulously, NCCN committees review important new advances and rapidly update the guidelines. Like almost all oncologists, every time I see a new patient I refer back to the guidelines to be certain nothing new has been overlooked in the care of the patient. Nationally, when patients are discussed at hospital tumor board discussions, physicians often refer to the guidelines. Beyond cancer, guidelines also exist for nearly every disease, many developed by specialty physician organizations.
But how well do oncologists follow these NCCN cancer care guidelines? A recent study looked at variability in our best cancer centers' compliance with published guidelines for cancer care. Over 25,000 patient records from NCCN institutions were evaluated for deviations from their own published NCCN guidelines.
The results were surprising. Poor compliance (over 10 percent deviations from the guidelines) occurred in 20 percent of all NCCN cancer centers. By disease, poor compliance with the guidelines were found in 41 percent of lymphoma decisions, 21 percent of breast cancer decisions, 15 percent of lung cancer decisions, and 12 percent of colorectal cancer decisions. Choice of chemotherapy represented 37 percent of the poor compliance data, and not following recommendations for diagnostic procedures represented 46 percent. More shocking was that some individual institutions had 60 percent to 80 percent noncompliance rates for decisions in breast cancer patients.
This shows patients that there can be great variability in physician recommendations for care of cancer, even at our nation's best cancer centers.
And this data in cancer is not alone. Other data in care of diabetes or care of heart disease also show some variable physician compliance that can threaten how well you might do if you have one of these conditions.
What are Dr. Cary's tips for you based on this new information?
• Be sure you have health insurance that allows you to get second opinions in case you should develop a life-threatening illness.
• When a test indicates you have a serious disease, be certain you ask for a second opinion. If it is a scan or X-ray or a biopsy, ask your physician to have the scans or biopsy reviewed by another radiologist or pathologist to be certain of the diagnosis.
• Once you are certain of the diagnosis and have a recommended treatment plan, ask for a second opinion at a center that specializes in your condition to see if there is any difference in recommendations. And if there is, ask for a third opinion to be sure you have the highest chance at cure with least side effects. Remember, Fran Drescher needed seven second opinions to get the right diagnosis of her uterine cancer and through her courage in seeking this additional advice, she survived and is cured (see my book Surviving American Medicine for Fran's story and for details on how and where to get second opinions).
• Use the internet to find guidelines for your illness. Then make a list of questions about how the guidelines apply to you and get clear answers from your doctor if there are any deviations between guideline recommendations and what your doctor has suggested. In cancer, use the NCCN guidelines, plus also information from the American Society of Clinical Oncology and the American Cancer Society.
The recent surprising information indicates there is sometimes poor compliance with standards of care. Make sure your care is following the best guidelines, or if your doctor is not following best guidelines, that the doctor has a good explanation of why you actually need something different. Good patients (and their families) get good information which gets good care which gets the very best outcomes. And often, good patients need to get second opinions.