By: Stephanie Birkey Reffey, Ph.D.
Sr. Director, Evaluation & Outcomes at Komen
The room was still on Friday as Gary Thompson, co-founder and CEO of CLOUD, Inc. began to tell attendees at Komen’s Big Data for Breast Cancer – West Coast meeting what provokes and pushes him in his efforts to use Big Data to improve cancer care. It started in 2009, when he and his wife Maureen headed to MD Anderson Cancer Center to battle her recurrence of breast cancer. As the next several months unfolded, Gary witnessed firsthand today’s most vexing issues of privacy, security and data. While her providers applied all of their skill and available information, in 2014, everything changed. Gary awoke in the early hours of a new day to find that the love of his life was no longer breathing. Their experience inspires Gary’s work today with CLOUD, Inc. (the Consortium for Local Ownership and Use of Data).
Gary Thompson, co-founder and CEO of CLOUD, Inc. sharing his story at Komen's Big Data for Breast Cancer - West Coast meeting.
Gary’s story is just one in a long and developing tale of leveraging Big Data for clinical care. The notion of exploring Big Data specifically for breast cancer stemmed from an encounter at Oxford between Robertson Foundation Founder Julian Robertson and Sir John Bell, professor of medicine and president of the Academy of Medical Sciences there. After an inspired discussion about the progress that Oxford was making in using large data sets within the British National Health Service to improve research and treatments, the Robertson Foundation decided to fund Komen’s first Big Data for Breast Cancer meeting in New York in October 2015. The second of Komen’s series of Big Data for Breast Cancer meetings occurred Feb. 24 on the West Coast, bringing together technology, health and patient advocacy leaders.
The potential for Big Data in breast cancer is virtually endless – literally the world at your fingertips. Imagine what could happen to the pace of research if scientists had access to data from thousands of laboratories and research studies worldwide. Imagine if they could share their data – the successes, failures and even the dead ends. Collaboration through Big Data has the potential to avoid potentially duplicative research, speed up the pace of promising research, and bring solutions to patients sooner.
Stephanie Birkey Reffey, Ph.D.
For example, patients today are subjected to standard treatments that may or may not work for the subtype of breast cancer they have or because of their medical history. But imagine if oncologists could type some basic patient information into a database (breast cancer subtype, age of the patient, medical history, lifestyle issues), and instantly find the treatments with the greatest potential for success – right from the start, and right for the individual.
With Big Data also comes the potential to sort through millions of pieces of information from medical records and wearable tech to identify patterns – lifestyle, ethnicity, genetic characteristics – that could lead to the prevention of breast cancer all together.
We’ve dipped our toes into these collaborative, large-scale projects in the past at Komen – before the words “Big Data” were in the popular nomenclature. In 2008, for example, we funded the Komen Tissue Bank at Indiana University, giving researchers around the world access to healthy breast tissue for their research. Sharing this data may help researchers identify how breast cancer develops, so that they can better identify targets for treatments.
In 2013, we partnered with the Dr. Susan Love Research Foundation on a large-scale online survey aimed at identifying what Dr. Love calls the “collateral damage” (or side effects) of breast cancer treatment. She is asking current and former breast cancer patients – and those who have never been diagnosed with breast cancer – to share information about their diet, lifestyle, and medical conditions with hopes of identifying patterns that could help identify those at risk, and patterns that could identify the best treatments for individuals.
In 2014, Komen joined with other breast cancer organizations to support the Share the Journey mobile app, also tracking the aftermath of breast cancer treatment.
And today, among the many research grants we fund, we’re supporting the work of Dr. Nikhil Wagle, who is using social media to collect data from breast cancer patients who volunteer to share their information to accelerate research into metastatic disease.
Komen's Chief Scientific Advisor Dr. George Sledge at Big Data for Breast Cancer - West Coast.
We fund these things because we believe the benefits of Big Data are endless. The challenges, however, are great, including patient privacy issues, protection of medical information, the willingness of institutions and researchers to share their research and findings, and the technical issues involved in bringing uniformity to thousands of different computer models used at institutions worldwide.
While great, they are not insurmountable, which is why Komen is moving from testing the waters to jumping into the Big Data pool. There’s a lot to learn and a lot to do, and none of it will be easy. But we have great optimism in the power of smart people working together to solve big problems.
Learn more about Big Data for Breast Cancer – including video from the Big Data conferences – here.
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