The LIVESTRONG Foundation is excited to be presenting at the upcoming Health Data Initiative Forum, aka Health Datapalooza on June 5 and 6 in Washington, D.C. The third annual meeting will convene folks from across the spectrum of policymaking, medicine, information technology and business to discuss topics, products and programs involving the use of ‘big data’ in healthcare. The meeting offers a unique mix of presentations, roundtable discussions, live demonstrations, data challenges, one-on-one meetings and more.
“Big Data” is coming up a lot these days – what is it?
Thanks to the integration of computers and digital technology into healthcare, our system has the potential to be faster, more efficient and more user-friendly. It also means that every piece of information, from lab results and medications to treatment costs to usage rates, can be automatically saved and stored away. When information piles up on hundreds, thousands and millions of patients, it can reveal insights into the way things are – and aren’t – working today. It allows researchers to compare trends across different geographies, specialties, and patient types. Techies and developers can share programming advances that improve access to these data sets so they’re easier to work with. And entrepreneurs can explore ideas for new businesses.
What about patients or caregivers? How does this impact me?
The LIVESTRONG Foundation will be sharing the stage at a roundtable event called “ONC’s Consumer e-Health Data Liberation Initiatives.” The focus of this session is to highlight successful ways that different initiatives have empowered patients to use data for themselves. Some examples include managing a chronic condition, figuring out payment and costs, or finding a provider.
The foundation’s central commitment is to empower cancer patients in every step of their journey, from diagnosis to treatment and post-treatment. We believe deeply that giving patients the ability to understand their diagnosis and treatment options is a critical part of the fight against cancer. Through our Cancer Navigation Center we often hear firsthand from patients about how complicated and disjointed the healthcare system is. These individuals are often left to fend for themselves. When patients have up-to-date data about their condition, their status and their treatment, it enables them to be in charge of appointments, gives them a voice in the clinic, and generally affords them more control over the course of their treatment and follow up care.
The Research Revolution
Another exciting breakthrough that is happening is on the research front. In a survey of more than 8300 individuals, the foundation found that 87 percent of patients, caregivers or others affected by cancer agreed that scientists ought to be able to review their information for research if it is not identifiable. By studying different therapies, costs, outcomes, patient demographics like age, gender, race and dozens of other data points, researchers can come up with treatment courses that are more customized and efficient. As we move towards a more effective research system, patients will soon gain the ability to sign up for notice of new clinical trials based on their diagnosis, therapy regimen and medical history. With advances such as personalized genomics around the corner, we are just seeing the tip of the iceberg.
While the foundation is looking forward to sharing our work and ideas in this session, we’re also looking forward to hearing from others. There are quite a few different initiatives underway around the world that are turning big data into useful, practical solutions for patients, doctors, researchers and policymakers. Driven by our commitment to patient outcomes, we are excited to contribute to the improvement of cancer and survivorship care and learn about the emerging possibilities that data and technology are unlocking.