The new platform, which was announced in its earliest stages in November of 2016, is designed to further ASCO’s mission of improving patient outcomes and quality, with the long-term goal of enabling the oncology community to learn from the experiences of millions of patients with cancer to help optimize the care of each patient.
Anyone in the cancer community, including healthcare providers, research institutions, life sciences companies, government agencies, and individual researchers, are offered access to distinct sets of aggregated, de-identified patient data with the purpose of investigating specific research questions. The requests will be reviewed by the CancerLinQ Discovery™ Research & Publications Committee– the volunteer committee charged with reviewing and approving research requests utilizing data from CancerLinQ Discovery™.
How to Submit a Request
- Submission—The CancerLinQ Discovery™ data access request involves two-steps. Step one involves downloading and completing the CancerLinQ Discovery Data Request Application. Step two requires applicants to fill out the CancerLinQ Discovery Data Request Form which includes contact, demographic, and organizational information. Once the forms are complete and submitted, an initial screening of the application will commence to ensure the application materials are complete and the submitted request aligns with ASCO’s mission.
- High-level Data Sufficiency Review—Next, a high-level review of data availability, quality, and sufficiency will be performed. At this stage, general pricing may be provided to the requestor, as well as initial project specifications, prior to moving on to an official review. Cost will depend on a range of factors, including an organization’s non-profit, government or industry status, status as a subscriber of CancerLinQ®, and the complexity of its research requests. Our goal is to make CancerLinQ Discovery’s insights widely available.
- Research & Publications Committee Review—Each CancerLinQ Discovery™ Data Request Application will be reviewed by the CancerLinQ Discovery Research & Publications Committee and approved before data access is granted. During this stage, the Committee may request additional materials or clarification from the data requestor. The review committee consists of CancerLinQ’s medical director; practicing oncologists, including those from CancerLinQ participating practices; health services and outcomes researchers; and patient advocates. The committee roster is available at www.CancerLinQ.org/About.
- Decision on Request—The time from request submission to notification of the Research & Publication Committee’s decision is expected to be about 6-8 weeks. Approved applicants will move forward and work with CancerLinQ staff to identify final contracting terms and detailed data specifications for the provisioning of CancerLinQ Discovery™ data.
CancerLinQ® is a powerful platform containing growing amounts of real-world cancer information. This national initiative will allow cancer providers to improve the quality and value of care by analyzing a growing number of cancer patient medical records, uncovering patterns and trends, and measuring their care against that of their peers and recommended guidelines.
CancerLinQ® and CancerLinQ Discovery™ are products of CancerLinQ LLC. For more information, please visit http://cancerlinq.org/research-database.