Patient Power: Crowdsourcing in Cancer

Patient Power: Crowdsourcing in Cancer
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The other day, I Googled the words “lung cancer.” I got 52,100,000 hits. That’s 52 million links and change to click on. I don’t have enough days left on earth to even make a dent in that. So I narrowed my search term and typed in “lung cancer breakthroughs.” That got me down to 423,000 items to wade through. Better, but still overwhelming.

Even when you start clicking more links and digging deeper to find helpful information, you’re in a seemingly endless maze. There are many thousands of Facebook pages for lung cancer support groups. A plethora of digital news sites have whole “briefing sections” devoted to lung cancer. Amazon has many e-books on the subject. Don’t forget academic centers, lung cancer associations and drug company websites. Then there is the 24-7 ubiquity of social media. This is what technology experts call information overload.

Understanding how to manage and manipulate vast sums of medical data to improve research and treatments has become a top priority in the cancer enterprise. Researchers at the University of North Carolina Chapel Hill are using IBM’s Watson and its artificial intelligence computing power to great effect. Dr. Norman Sharpless told Charlie Rose from CBS’ 60 Minutes that Watson is reading tens of millions of medical papers weekly (8,000 new cancer research papers are published every day) and regularly scanning the web for new clinical trials most people, including researchers, are unaware of. The task is “essentially undoable” he said, for even the best, well-informed experts.

UNC’s effort is truly wonderful albeit a macro approach, less tailored and accessible only to certain medical centers. My experience tells me what the real problem is: How does a patient newly diagnosed with lung cancer, fragile and scared find the most relevant information without being overwhelmed and giving up? If the experts can’t easily find key data without Watson’s help, and Google’s first try turns up millions upon millions of semi-useful results, how do we build hope that there are good online answers for our patients?

We’ve thought about this a lot at the Addario Lung Cancer Foundation and figured out that the answer lies with the patients themselves. Why not crowdsource it with people who have lung cancer, their caregivers and family members?

So, we created the first-ever global Lung Cancer Patient Registry that simplifies the collection, management and distribution of critical health-related information – all in one place so that researchers and patients can easily access and find data specific to lung cancer patients.

This is a data-rich environment for those focusing solely on finding a cure for lung cancer. And it gives patients access to other patients to compare notes and generally feel safe sharing intimate details with their peers.

This is a community that wants to help itself and others, even those who may not be diagnosed for years, by providing their medical data that is housed in one secure place that all researchers can tap into.

The process of joining the registry is easy and secure. Those who do fill out a survey answering questions about types of diagnosis, biopsies, stage of cancer tumor and other relevant data, including related illnesses.

Registrants can see patients who are nearby, and, with the right privacy settings in place, review others’ medical histories to look for similar diagnoses and problems. Registrants also can find a comprehensive nationwide list of healthcare experts focused on lung cancer if they are looking for a new doctor, researcher or even a second or third opinion.

For researchers, there is data on whether patients have had molecular therapy, immunotherapy and other information on precision medicine or family histories of cancer. And there are patient reviews of their experiences with cancer education, support services and health insurance.

We launched the beta version last year, and now the full version is live and hundreds of patients are joining. Patients can sign up online at

Our foundation has always been patient-centric, and our new registry is another example of the importance of patient power. They are our most important partner in clinical research, but unfortunately, not all in our cancer research community agree.

I recently wrote that we need to shift the way we look at clinical research. The current biomedical innovation paradigm, of discoveries moving from the laboratory to the patient, needs to shift its focus so that clinical researchers first take into consideration the patient and new discoveries move from the patient to the bench and then back to the patient. This will transform research to ensure it is patient driven and truly personalized.

This is precisely why our Lung Cancer Patient Registry is so important. The researchers need good patient data and soon, as our registry grows, they will have plenty of it.

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