Precision medicine holds great promise for patients, and it is viewed as the future of healthcare. A personalized and customized approach to treating disease will ensure that patients get the care they need, when they need it.
Susan G. Komen®’s Big Data for Breast Cancer (BD4BC) initiative is one way by which Komen is working to make that future a reality for women and men battling breast cancer. BD4BC seeks to use big data — the integration of large amounts of different types of data including Electronic Health Records, administrative and health insurance claims databases, large data repositories (registries and cohorts), and genomics and other -omics data — to fuel scientific discoveries and accelerate the delivery of equitable, patient-focused care.
To accomplish that goal, Komen is deploying programs targeting a broad range of audiences to explain big data and accelerate its use in the fight against breast cancer. Ultimately, the public will have the information and the tools they need to easily share their data. Komen’s written communications will help share the information we gather during BD4BC meetings, the progress we’re making toward the initiative’s goals and identify opportunities for collaboration. These will be tailored for scientific and non-scientific audiences.
As an example, Komen developed Big Data for Patients to provide training to patient advocates through webinars and in-person sessions with the goals of educating them about big data and empowering them to get involved in the data science research process. While a lot of progress has been made over the last several decades to involve patient advocates in research (both as members of the research team and as grant reviewers), data science teams need a new type of patient advocate: One that understands cancer biology and how data science methods can be used in that field. Participants that complete this program will be able to effectively review grant applications and bring the patient voice to data science research teams. They will also be able to explain the promise of big data to their communities.
For the general public, including those with breast cancer and their caregivers, Komen will develop an online portal designed as a hub of information for visitors to further their understanding of big data. Visitors of Komen’s BD4BC Knowledge Portal will use this centralized resource to find a range of materials — from basic information included in “Big Data 101” to more advanced information about actual case studies describing how big data methods are leveraged to enhance standard of care.
By providing education and resources around big data, Komen will help those with breast cancer understand the promise of big data. By knowing more about their own data, patients and their providers can make informed decisions about their care. The future of healthcare will be better if patients, scientists and doctors work together to better understand a disease, how it spreads and how best to treat it. BD4BC moves us closer to precision medicine and better patient outcomes.