Data Sharing

As Dr. Biden has said, “Right now, if we stopped research entirely, if we never spent another dime on finding new cures — we could still save thousands more lives by doing one thing: sharing data and knowledge that already exists.”

We see and desire to create a world in which the cancer ecosystem makes better use of data such that each patient benefits from insights generated by the collective experience of the entire oncology community.

We have developed three work streams to improve patient and research data sharing, focused in the following areas:

  • Patient education and empowerment as related to their own medical data;
  • Data capture and sharing consistency through adoption of common data elements; and
  • Creating incentives for research data sharing.

OUR APPROACH

PATIENT EDUCATION AND EMPOWERMENT

  • Cancer patients are forced to jump through hoops, on top of fighting for their lives, to receive their own medical record data.
  • Only a portion of cancer patients are aware of their right to own their data, and an even smaller portion understand the potential benefits, such as sharing their data for a second opinion and switching providers more easily.

Goal: Increase the number of cancer patients who invoke their right of access to their medical data, can easily access their data, understand why it is relevant to do so, and donate their patient data to research efforts that they find to be valuable and interesting.

COMMON DATA ELEMENTS

  • While aggregating and analyzing cancer patient treatment and outcome data from across the country has promise to help all oncologists and patients better choose the right treatment for a specific cancer, most patients today do not benefit from the experience of others because this data is unavailable to their oncologist.
  • This is because patient data is typically not captured consistently across cancer centers, and even when they are, the information can be insufficient to describe essential tumor- and patient-specific data needed to inform treatment.

Goal: Gather the evidence to show that standardized collection of a new minimum set of cancer-specific data elements can inform better clinical decision making and align the cancer community around a minimum set of critical cancer-specific data elements.

INCENTIVES FOR RESEARCH DATA SHARING

  • There is a long-standing culture of siloed scientific and clinical discovery.
  • Systems of academic science often reward individual scientific accomplishment over team science and sharing of results (e.g., tenure and promotion; grant funding)
  • Institutions and companies do not have a clear business case for sharing research-related data with other centers.

Goal: Identify policies and incentives to support a culture of data sharing across academia, cancer centers, publishers, and industry.

WORKING GROUP MEMBERS

  • CHAIR: John Wilbanks, Chief Commons Officer, Sage Bionetworks
  • Michael Caligiuri, M.D., President, City of Hope National Medical Center
  • Aneesh Chopra, President, CareJourney (Co-chair, Patient Education and Empowerment Workstream)
  • Danielle Ciofani, Director Data Strategy and Alliances, Broad Institute (Co-Chair, Common Data Elements Workstream)
  • Bill Dalton, Ph.D., CEO, M2GEN (Co-Chair, Incentives For Research Data Sharing Workstream)
  • Andy Futreal, Ph.D., Chair, Department of Genomic Medicine, MD Anderson Cancer Center
  • Stan Gerson, M.D., Director, Case Comprehensive Cancer Center
  • Cliff Hudis, M.D., CEO, American Society of Clinical Oncology (ASCO)
  • Mark Jacobstein, Chief User Engagement Officer, Guardant Health (Co-Chair, Patient Education and Empowerment Workstream)
  • Reed Jobs, Director, Health, Emerson Collective
  • Robert Miller, M.D., Medical Director, ASCO CancerLinQ (Co-Chair, Common Data Elements Workstream)
  • David Sampson, VP Journals and Publishing, ASCO (Co-Chair, Incentives for Research Data Sharing Workstream)

RELEVANT RESOURCES

Joe Biden: To Save and Improve Lives Using Data, Details Matter (Fortune, March 19, 2018)
TIME: Researchers want cancer patients to share medical information in search of cures
Panel clarifies patients’ rights, privacy rules, and understanding data ownership
Eliminate Cancer Initiative commits to aggregating brain tumor data
National Cancer Initiative commits to sharing data across 12 countries