caBIG^® Enabling Data Sharing by Addressing Policy Issues

caBIG^® provides both the infrastructure to enable data sharing and the tools to control data access. Issues of data security and evaluating which data sets can be shared fall to the Data Sharing and Intellectual Capital (DSIC) Workspace, which addresses the legal, regulatory, ethical, policy, academic, proprietary, and contractual issues related to data exchange for public health and research purposes. caBIG^® is based on the belief that strong confidentiality, privacy, and security measures are both necessary and feasible in any electronic health information exchange environment, and that the measures can be scaled to accommodate a broad range of participants without unnecessarily impeding scientific discovery and medical progress.

caBIG^® provides guidelines and tools to help researchers evaluate the sensitivity of their data. caBIG^® has developed the Data Sharing and Security Framework (DSSF), which includes analytical tools to help researchers address the issues of federal privacy regulation, human participant protections, sponsor contract compliance, and proprietary interests. For information about the specific tools and support, please visit the DSIC Knowledge Center (https://wiki.nci.nih.gov/display/DSIC).

"There is an enormous amount of clinical data now coming out of these studies—clinical data on the patient, their outcome, and their treatment, as well as all of their demographic characteristics and then the genetic data on the tumor and the patient. It's a large amount of data, and we need to have the tools to be able to put all of that data together to integrate it to communicate with other institutions who may be doing similar studies so that we can compare and collaborate—standardized tools that allow one center talk to another center or one investigator to talk to another and then allow the integration of this vast amount of data. And I think that's what caBIG^® is hoping to do, intending to do is to provide that standardization and flexibility to implement new techniques and new methods as they come along."
  C. KENT OSBORNE, M.D.  |  Director Baylor Cancer Center

Enabling the Nationwide Health Information Network

caBIG^® technology is being integrated into the architecture of the Nationwide Health Information Network (NHIN) (http://www.hhs.gov/healthit/healthnetwork/background/), whose goal is to provide secure, nationwide access to health information by connecting researchers, caregivers, providers, and patients in a seamless network.

caBIG^® software provides the "IT glue" to connect different data types and disconnected IT systems, providing physicians and researchers with access to critical healthcare data regardless of where it is stored.

Developing Electronic Health Records for the Oncology Community

Electronic health records (EHRs) are widely perceived as essential to the achievement of improved healthcare and personalized medicine. While broadly applicable EHRs are widely available, there remains a need for a specialty EHR that addresses the unique data needs and physician support requirements of oncology.

The American Society of Clinical Oncology (ASCO), the preeminent professional society for oncologists, and the NCI are collaborating to design an oncology EHR that will utilize caBIG^® standards for interoperability. This new EHR will then be deployed to the participating hospitals of the National Community Cancer Center Program (NCCCP), bringing advanced information technology to traditionally underserved patients. By leveraging existing work already conducted by a variety of organizations, it is anticipated that a pilot program could be deployed to the NCCCP sites in 2009.

"I think that we're entering an era where the greatest impact that we can have in terms of improving care for cancer patients is going to be through collaboration. And if we are really going to be able to collaborate, we have to be able to communicate effectively. We have to be able to share data. We have to be able to share biospecimens. It's about the impact, not about the ownership. And I view the caBIG^® initiative as a strategy really to provide a translator to support collaboration and sharing of data - sharing of information across institutions."
  MARY BECKERLE, PH.D.  |  Executive Director Huntsman Cancer Institute at the University of Utah