Stakeholder group aims to improve exchange of cancer research and patient information.

Stakeholder group aims to improve exchange of cancer research and patient information.

Advances in personalized cancer care will require a marriage between the rapidly growing and diverse sets of scientific data and the patient health records that have barely begun to be standardized and often lack key information. Solving this huge problem appropriately and efficiently raises daunting technical, operational, and legal concerns.

These challenges will be addressed by a new coalition of stakeholders for “data liquidity” in cancer informatics, proposed in February at a workshop sponsored by the Institute of Medicine's (IOM) National Cancer Policy Forum and presented in an IOM discussion paper in May.

The paper defines data liquidity as “the rapid, seamless, secure exchange of useful, standards-based information among authorized individual and institutional senders and recipients.” It envisions the coalition as a nonprofit membership organization with representation from basic research scientists, clinical researchers, clinicians, bioinformatics and information technology experts, biostatisticians, comparative-effectiveness research experts, health-services researchers, epidemiologists, patient advocacy organizations, payers, and others involved in providing or sharing cancer data.

“We have assembled a steering committee of 12 senior individuals from academia, policy, and commercial entities,” says Marcia Kean, chairman of strategic initiatives at Feinstein Kean Healthcare in Cambridge, MA, and lead author on the discussion paper. “Since all sectors are likely to benefit, we expect participation by all.”

Among its activities, the coalition will convene the cancer community to seek consensus on opportunities for sharing of research data, advocate standards for data collection and exchange, and serve as an “honest broker” helping to set up transactions within the community.

Speaking at the workshop, William Dalton, PhD, MD, director of the Moffitt Cancer Center and Research Institute in Tampa, FL, said that researchers need to “develop an integrated network system to deal with the overwhelming amount of information from basic, translational, and clinical research.” Dalton, a member of the steering committee for the coalition, commented that the issues include technical problems with data sharing, such as the need to safeguard intellectual property rights, and data governance, such as ensuring the validity and quality of data, and making sure that data can be understood within different contexts depending on who needs it.

Also at the workshop, Lawrence Shulman, MD, chief medical officer at Dana-Farber Cancer Institute in Boston and a coalition steering committee member, pointed out that current electronic health records (EHR) are neither uniform nor in sufficiently widespread use. Additionally, even the best EHRs don't track key cancer-related information, including patient demographics and tumor type, with both anatomic and nonanatomic staging (for example, if the tumor has a KRAS or EGFR kinase mutation), Shulman said.