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Giving back: data for cancer research

Giving back: data for cancer research

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Scott Reid lost his wife to lung cancer 19 days after they were married. It has been 15 months since she passed away. She was 46 years old.  

“I still miss her more than anything,” says Reid, who has used his grief to energize his efforts to become a patient advocate in this months since his wife, Gail, died.

Surviving for only a year with stage 4 lung cancer is not unusual. It’s a fact that weighs on the mind of a person like me, who got a stage 4 diagnosis last March.

“You read the statistics on lung cancer and you hope and pray your case will be the exception,” says Reid. “But as time goes by, you realize it’s not.”

His words send chills up my spine.

I don’t know when my end will come, but so far Gail’s story sounds a lot like mine. I also had good health through middle age, then wham! Diagnosed with stage 4 lung cancer.

About 160,000 Americans die of lung cancer each year and just 15 percent survive the disease, which is often diagnosed at a late stage, after it has spread to other parts of the body.

Lung cancer is the second-most commonly diagnosed cancer and it kills more people than cancers of the breast, prostate, colon and pancreas combined.

Overall, roughly $1 out of every $10 in federal funds spent on cancer research goes to lung cancer. Some observers believe lung cancer lags other cancers in research funding because of the stigma attached to smokers contracting the dreaded disease, as I wrote about previously.

The money is worth spending. But frankly, it has not helped science make much progress. Survival rates for lung cancer are still just 3 percent over where they were 4 decades ago when President Richard Nixon declared the “War on Cancer,” notes Dr. Greg Sorensen, CEO of Siemens Healthcare. 

Sorensen and Reid say they think having more accessible data could make a difference for people like me, who are fighting the disease today. 

Reid says he is frustrated by inadequate funding and the imbalance in research dollars. I share that frustration.

But he and others believe it would help researchers to have easier access to better data.

After Gail died, Reid  got involved with a research program run by the non-profit Lung Cancer Alliance and sponsored by Siemens Healthcare, a manufacturer of computed tomography (CT) scanners and other imaging equipment. Reid donated her scans and medical records, with the full support of her family.

The “Give A Scan” program is the first to ask lung cancer patients, as well as those at risk, to donate their CT scans and other medical information to an anonymous data base. A pilot program is going national this week.  Siemens Healthcare has provided $80,000 this year in seed funding for the national roll out.

Lung Cancer Alliance President and CEO Laurie Fenton Ambrose says Give A Scan compiles information about such things as course of treatment, family medical history, and lifetime exposure to smoking and other cancer-causing agents. The CT scans and data are stripped of personal identifiers before uploading to the organization’s website. The data offer a more complete picture of each patient than might be obtained through other databases.

“It’s the meta-data that makes this unique,” says Ambrose, adding that all of it is freely accessible to researchers, anywhere in the world.  There is no cost to donors, either, except if the hospital charges to transfer a patient’s CT or other images to a disk.

Ambrose pointed out that most people are unaware that they own their medical records and can do as they please with them.

The ultimate goal is to guide research and speed up the development of more effective diagnostic tools and treatments. Reid says Gail would be happy to know that her scans and her medical history are being used to pursue a cure.

“She worked in market research and knew how important it is to have data available,” he says. “Before she got sick, she always wanted to make the world a better place, so this is her way to still be involved.” 

Gail also would appreciate that the data is rendered anonymous and that patients do not pay to participate.

I’ve decided to donate my own scans and medical records to this research program. I can’t see a downside, and in the war still underway against cancer, I’m glad to join an effort to give researchers a fighting chance.

This post originally ran in the "Cancer In Context" blog and has been reposted with permission from Thompson-Reuters.

Image by Pulmonary Pathology via Flickr

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