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CancerBase

CancerBase is driven by patients who choose to answer as few or many questions they wish for anonymized inclusion on a real time global cancer map. CancerBase is a grassroots collaboration of patients, scientists, and volunteers seeking a new way to connect patients all around the world. Our participation in this endeavor being launched simultaneous with June 29th Moonshot Summit is to let everyone on the planet know: we want our voices heard. We want to share our Information among ourselves and with anyone who seeks to take a look. It's time for patients to take the lead. Our lives are on the line, we should be more pro-active in pushing an agenda that will make a difference in our lives.

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CancerBase

  1. 1. Final – June 28 2016
  2. 2. It’s a platform for cancer patients to share data to expand the knowledge of the global cancer community
  3. 3. “When I google it all I get is doom and gloom and I don’t know where to turn or whom to trust” Sonja Durham, 2016 “What are my treatment options and how many lines of therapy are available to me?” Lori Marx-Rubiner, 2016 Patient side
  4. 4. Today, CancerBase, a grassroots collaboration of patients, scientists, and social media volunteers, will go live with a way to connect patients all around the world. The White House Factsheet
  5. 5. • Basic but critical information about most cancers and how they spread through the body just isn't readily available • CancerBase seeks to solve this problem. • Potentially millions of patients might use CancerBase to anonymously contribute data • Helps patients and scientists to see cancer more clearly The White House Factsheet
  6. 6. • For an intuitive sign-in experience patients connect to CancerBase using Facebook and Twitter Login • Patients can answer as few or many questions as they want about their diagnosis • Anonymized inclusion in a global cancer map. The White House Factsheet
  7. 7. What’s the biggest problem? Data Cancer data are typically outdated and scattered around the world
  8. 8. Fresh, dynamic, data about cancer… from tens or hundreds of millions of people who each answer 5 simple questions. The first ever global crowd-sourced cancer map =
  9. 9. 5 questions What type of cancer do you have? Has it metastasized? When were you born? Where are you from? Male or Female
  10. 10. To help patients understand “What’s my life going to look like? “Am I getting the best care?” “What should I ask my doctor?”
  11. 11. Demo
  12. 12. Key considerations • Patients share only as much as they want to • Data are de-identified and anonymized before sharing • No Protected Health Information • No genomics • No eMR • 100% for patients, by patients • Single click data wipe and forget option
  13. 13. Patients are in control • Can skip questions • Can choose to not share data • Can delete account
  14. 14. Anonymity Sex Age bracket First organ affected Metastasis [Y/N] Location within 70 miles keep identifying info private CancerBase shares only:
  15. 15. Cut through the clutter Have questions be responsive to previous answers Make relevant data easy to navigate Keep questions and data relevant to each patient
  16. 16. Get info now
  17. 17. Real-time data map
  18. 18. Store your data in a timeline
  19. 19. Gain traction
  20. 20. Ready to Light Up the World Sonja Durham Jack Whelan AnneMarie Ciccarella Rachael Porter Karen G. Lori Marx- Rubiner
  21. 21. Thanks to numerous patients, survivors, and families, who provided stories, questions, and ideas Thanks to many people (from many different organizations) who volunteered
  22. 22. The Future …
  23. 23. Patients should be able to invest their data to understand their cancer and make better decisions Researchers should be able to prioritize their science based on real-time data The public and policy makers should have much better information at their fingertips
  24. 24. Thank you

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