Members will set guidelines for data sharing among providers as a necessary step to support precision medicine programs in their institutions

One sign that hospitals and health networks are getting serious about precision medicine is the speed at which an IT company’s precision medicine advisory council generated several hundred hospital participants. It demonstrates that data is becoming more important in identifying medical needs and advancing healthcare delivery. Therefore, information-sharing is crucial in the development of electronic health records (EHRs) and telemedicine services.

Syapse, a San Francisco-based company that develops platforms which interpret and analyze oncology data for health networks and hospitals, recently sent out invitations to some of the biggest hospital players to join its new precision medicine council. More than 200 health networks and hospitals signed up!

Many Leading Hospitals, Healthcare Systems on Precision Medicine Council

The inaugural providers on the Syapse Precision Medicine Council include:

“We are privileged to serve a progressive group of early adopters in the field of precision medicine,” said Ken Tarkoff, CEO of Syapse, in a statement. “They have asked us to facilitate the exchange of early lessons within our network and to broker insights that benefit the entire group. Through the power of this collective exchange, we believe Syapse customers will help define best practices for the industry.”

The nascent council plans to meet annually. It will have its first meeting in San Francisco in October.

Ken-Tarkoff-CEO-Syapse

Ken Tarkoff, CEO of Syapse (above) says that the precision medicine council of some of the most prominent hospital systems in the US will be “dedicated to advancing precision oncology through sharing best practices.” (Photo copyright: Syapse.)

Genomic Data Sharing Faces Many Roadblocks

That such a council is forming can only be considered an encouraging move in the precision medicine movement. A study published last May in the journal Health Affairs concluded that despite “data sharing being a precondition of precision medicine … data are not being shared to a degree that can trigger the expected data-driven revolution,” and that the issue has become worse in recent years.

Among the reasons are concerns about patients having informed consent regarding the use of their data, and scholars being able to work autonomously without any outside influences bearing down on their work. Properly curating data also has been a concern, and there are conflicting guidelines on data sharing issued by numerous organizations. “The guidance we studied, despite its abundance, has not resulted in a cohesive system of incentives able to reconcile the interests and expectations of different stakeholders,” the study said.

There are some regional examples of hospitals sharing genomic data. Among the most prominent is the Children’s Genomic Medicine Consortium, which consists of seven pediatric hospitals in the Midwest.

Another study, also recently published in Health Affairs, noted that some current genomic databases lack the genetic diversity scientists believe are required to properly treat some ethnic groups. “We found significantly fewer studies of African, Latin American, and Asian ancestral populations in comparison to European populations” in two large databases: the Genome-Wide Association Study Catalog (NHGRI-EBI GWAS) and the database of Genotypes and Phenotypes (dbGaP).

Thomas Brown, MD, Executive Director of the Swedish Cancer Institute in Seattle, said it joined the council “because of the opportunity to share data on similar patients, for both patient care and data mining research purposes, through a common technology platform,” and by being part of the council it “will also allow us to engage strategically on best practices in scaling precision medicine programs for the future.”

In the coming months, the members of the council will have several critical challenges, including whether they will be able to overcome cultural and institutional differences in order to create a cohesive data-sharing policy, and whether the council’s work product will be acceptable to a wide array of providers.

—Ron Shinkman

Related Information:

Learn About NIAID’s Genomic Data Sharing Policy

Boston Children’s Hospital’s Genomic Data Sharing Policies

Blockchain-Based Platform for Largest Genomic Data Hub

St. Jude Children’s Research Hospital Launches Public Repository of Pediatric Cancer Genomics Data