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biomedical research in an increasingly digital world

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20150113 Department of Defense Breast Cancer Research Program

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biomedical research in an increasingly digital world

  1. 1. brian m. bot | sage bionetworks | @BrianMBot department of defense breast cancer research program vision setting meeting 2015 biomedical research in an increasingly digital world
  2. 2. biomedical research in an increasingly digital world
  3. 3. biomedical research in an increasingly digital world
  4. 4. 6% 21% 8% 11% 54% cannot reproduce can reproduce in principle can reproduce w/discrepancies can reproduce from processed data w/ discrepancies can reproduce partially the status quo tolerates poor communication of findings Ioannidis A. et al. Nature Genetics 2009
  5. 5. “Scientists often study the past as obsessively as historians because few other professions depend so acutely on it. Every experiment is a conversation with a prior experiment, every new theory a refutation of the old” -Siddhartha Mukherjee, The Emperor of All Maladies
  6. 6. scientific method 1. define a question 2. gather information and resources (background research) 3. form a hypothesis 8. retest (frequently done by other scientists) 4. test hypothesis experimentally 5. analyze experimental data 7. publish results 6. draw conclusions based on data
  7. 7. 7. publish results
  8. 8. finitein ∞ ...
  9. 9. sage bionetworks ~40 FTEs 1/2 research - 1/3 platform - 1/6 leadership/support
  10. 10. sage bionetworks a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons focused on a world where biomedical research will fundamentally change to be more open and collaborative supports communities of researchers working collaboratively across disciplines
  11. 11. sage bionetworks focused on a world where biomedical research will fundamentally change to be more open and collaborative
  12. 12. focused on a world where biomedical research will fundamentally change to be more open and collaborative open sage bionetworks
  13. 13. open access focused on a world where biomedical research will fundamentally change to be more open and collaborative sage bionetworks
  14. 14. accessibility focused on a world where biomedical research will fundamentally change to be more open and collaborative sage bionetworks
  15. 15. open access focused on a world where biomedical research will fundamentally change to be more open and collaborative sage bionetworks
  16. 16. open science focused on a world where biomedical research will fundamentally change to be more open and collaborative sage bionetworks
  17. 17. science focused on a world where biomedical research will fundamentally change to be more open and collaborative sage bionetworks
  18. 18. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons focused on a world where biomedical research will fundamentally change to be more open and collaborative supports communities of researchers working collaboratively across disciplines sage bionetworks
  19. 19. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons tool for collaborative science re-imagined informed consent patients as partners sage bionetworks
  20. 20. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons enables sharing of all resources (data, code, results) and their relationships to one another provides mechanism to communicate in real time instead of only at time of publication supports open scientific collaborations for clear, reproducible science sage bionetworks
  21. 21. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons enables sharing of all resources (data, code, results) and their relationships to one another sage bionetworks
  22. 22. tool for collaborative science re-imagined informed consent patients as partners a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons sage bionetworks
  23. 23. “biomedical research needs to empower patients with the voice and the tools they need to manage their health, understand their disease and partner in research” a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons sage bionetworks patients as partners
  24. 24. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons sage bionetworks “participants will be provided real-time graphical representations of their data, access to their own data at will (to provide to healthcare professionals, donate to other studies, etc.), and also research notifications when new insights are available” sharing two ways
  25. 25. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons sage bionetworks
  26. 26. tool for collaborative science re-imagined informed consent patients as partners a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons sage bionetworks
  27. 27. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons written by a doctor reviewed by a lawyer edited by a committee sage bionetworks
  28. 28. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons interaction design prioritizes the user and the experience patient-centered consent (pcc) toolkit sage bionetworks
  29. 29. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons deploy consent as a process via mobile, web patient-centered consent (pcc) toolkit sage bionetworks
  30. 30. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons assist informedness for complex documents patient-centered consent (pcc) toolkit sage bionetworks
  31. 31. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons nouns and verbs patient-centered consent (pcc) toolkit sage bionetworks
  32. 32. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons sentences via animation patient-centered consent (pcc) toolkit sage bionetworks
  33. 33. sage bionetworks metadata& survey& sensor&tasks& wearables& Consent& Toolkit& Bridge& Server& Synapse& Stores&study&data& Assigns&study&code& De<iden=fies&& Syndicates& Consent& Data&capture& No=fica=ons& Study<specific&folder& Auto<deposit&aAer&embargo&period& Authorized&users&
  34. 34. a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons focused on a world where biomedical research will fundamentally change to be more open and collaborative supports communities of researchers working collaboratively across disciplines sage bionetworks
  35. 35. supports communities of researchers working collaboratively across disciplines end game is not collaboration
  36. 36. supports communities of researchers working collaboratively across disciplines accelerate research
  37. 37. supports communities of researchers working collaboratively across disciplines end disease
  38. 38. supports communities of researchers working collaboratively across disciplines end breast cancer
  39. 39. end breast cancer incentives of the individual don’t align with greater goals of the field
  40. 40. collaboration around common data collaboration around common question
  41. 41. “systematic exploration of the entire spectrum of genomic changes involved in more than 20 types of human cancer”
  42. 42. TCGA Pan-Cancer Consortium analysis of: 12 tumor types 6 molecular profiling platforms
  43. 43. 18NPG papers 68core projects 248researchers 28institutions 1070datasets 1723results TCGA Pan-Cancer Consortium
  44. 44. TCGA Pan-Cancer Consortium
  45. 45. doi:10.7303/syn1710680.4 TCGA Pan-Cancer Consortium
  46. 46. collaboration around common data collaboration around common question
  47. 47. CRC Subtyping Consortium
  48. 48. A B C D E F 1 2 3 4 5 6 CRC Subtyping Consortium
  49. 49. A B C D E F 1 2 3 4 5 6 ... CRC Subtyping Consortium
  50. 50. collaborative analyses cloud-based file storage CRC Subtyping Consortium
  51. 51. code associated with results CRC Subtyping Consortium
  52. 52. CRC Subtyping Consortium
  53. 53. collaboration around common data and question
  54. 54. public / private partnership between NIH, 10 biopharmaceutical companies and several non-profit organizations Accelerating Medicines Partnership
  55. 55. Accelerating Medicines Partnership ($ Millions) Total Project Total NIH Total Industry Alzheimer’s Disease 129.5 67.6 61.9 Type 2 Diabetes 58.4 30.4 28 Rheumatoid Arthritis 41.6 20.9 20.7 TOTAL 229.5 118.9 110.6
  56. 56. Accelerating Medicines Partnership Target Discovery Target Discovery Target Discovery Target Discovery Target Validation Target Validation Target Validation Target Validation Shared Information for Target Identification coordinate sharing of early-phase target identification insights
  57. 57. harmonize incentives of the individual with the greater goals of the field
  58. 58. department of defense breast cancer research program vision setting meeting 2015 brian m. bot —————— brian.bot@sagebase.org @BrianMBot sage bionetworks biomedical research in an increasingly digital world

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