The American Society of Clinical Oncology is launching a project to collect data on the care of hundreds of thousands of cancer patients for use in the treatment of other patients. Host Rachel Martin talks with Dr. Sandra Swain, president of the group, about CancerLinQ.
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RACHEL MARTIN, HOST:
This is WEEKEND EDITION from NPR News. I'm Rachel Martin.
This past week, a leading group of cancer doctors announced an effort to harness the power of computer science and technology in their fight against the disease. They're using what's known as Big Data, a large and complex collection of information. In this case, data on the care of hundreds of thousands of cancer patients, to help guide and refine the treatment of other people suffering from cancer.
Dr. Sandra Swain is president of the American Society of Clinical Oncology. It is the group that has launched the effort called CancerLinQ. She joins us from the Washington Cancer Institute in Washington, D.C.
Welcome to the program.
DR. SANDRA SWAIN: Hi. How are you doing?
MARTIN: I'm doing well. Thank you.
So, when I first read about this program, I guess I was a little surprised to think that this isn't already happening. I mean, you might think that in the fight against cancer, that information about diagnoses and treatments would be shared so doctors could learn and improve patient outcomes. But explain why this actually doesn't really happen?
SWAIN: Well, information is shared now. The problem is it's very fragmented, so it's in lot of different places, and a lot of different electronic records that don't talk to each other. So that's what we're meaning by its not shared. So we have to gather everything. The patients have to gather everything. So our goal is really to have it seamlessly come in to one source and at what we call the point of care, when the physician is actually sits sitting there talking to the patient, everything is there.
And also, we will have our different guidelines and are different quality measures that will pop up when, you know, we make recommendations or when we get all the information about the patient, they can help guide the treatment.
MARTIN: So, let's talk a little bit about how this would actually work. I mean, are you talking about patience who suffer from all kinds of cancer? Or which patients would sign on to this, which physicians?
SWAIN: So, and right now we're doing the breast cancer prototypes, just to see if we could actually do it. And we have shown the proof of principle that we can do it. Some of the hurdles that we thought we would have to overcome included whether doctors would be willing to let us have access to the patient data. Now, none of the patients are identified in the databases that we have in the information that we have. So, it's what we called anonymized.
And we, right now, have over 100,000 records from breast cancer patients from several practices. So that was not a problem. Physicians were very excited about this project and wanted to contribute to it.
So now, the next goal will really be too broaden it to all patients with cancer. Then that's our goal is to do that. It will probably take 12 to 18 months to do that after we make a big commitment to do it which we'll decide in the next couple of months.
So, the beauty of what we're proposing is to gather these millions of data points. And then be able to aggregate the data and, for example, if a doctor is seeing a patient with some, you know, different characteristics of their tumor, go in and look. OK, there are 300 of these cases in the U.S. that have been diagnosed and treated; this is how they were treated and this is what their outcome was. So it's instant information to help the doctor.
MARTIN: If I could ask you to take the long view, where are we in the fight against cancer? I mean, is this still a disease that we should expect to have to live with for several more generations?
SWAIN: Well, I'm hoping not. I think, you know, in my 30 years of doing this, I've seen huge advances. And, as you know, the survival is actually much better, the mortality's decreased for breast cancer over the last several years. So, that's very exciting to me. And I think it's for several reasons. One, women are getting screened with mammograms that are having earlier stages disease diagnosed, plus our treatments are a lot better.
So we have seen huge advances. So I would hope that we won't be living with it for too many years longer.
MARTIN: Dr. Sandra Swain, she's the president of the American Society of Clinical Oncology. She's also the medical director at MedSTAR Washington Hospital Center.
Thanks so much for joining us.
SWAIN: Thank you.
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