An unprecedented volume and diversity of data have the potential to enable the Obama administration’s Cancer Moonshot to meet its goal of achieving a decade’s worth of progress against the disease in just five years. However, if the initiative is to succeed, there are significant barriers that must overcome.
That’s the central message of a new report sent to President Barack Obama by Vice President Joe Biden, who is spearheading the Cancer Moonshot.
In the document, Biden notes the abundance of data “being generated daily through genomics, family history records, lifestyle measurements, and treatment outcomes,” with the opportunity to discover “new patterns of causes, earlier signs of cancer, and successful treatments of cancer.”
And, thanks to advances in supercomputing power, the Vice President contends that researcher now have the ability to “analyze enormously complex and large amounts of data to find answers we couldn’t just five years ago.”
Nonetheless, there are several major challenges standing in the way of medical breakthroughs, according to Biden. They include:
- A lack of open access and rapid sharing of research data and results allowing researchers to build on each other’s successes—and failures—to make new discoveries faster.
- Hurdles surrounding the sharing of medical records that offer no additional level of protections for patients.
- Insufficient collaboration around, and utilization of, technological capabilities to harness the vast amounts of data within electronic health records to improve cancer prevention, diagnosis, treatment and care.
“Ultimately, we have to build a network—centered on the patient—that makes data accessible, shareable, and meaningful,” Biden’s report states. “And we must advance a modern, interoperable electronic health ecosystem, with patient access and sharing capabilities between clinical care providers and research.”
Still, Biden does not see these obstacles as insurmountable but believes progress is being made, particularly in the area of information sharing.
“To share research results and data faster, NIH launched a new partnership to bring together drug companies, major cancer research centers, foundations, and philanthropies to collaborate on early stage research—i.e. the basic biology of cancer—and to share all of the data with everyone,” states the vice president’s report. “So instead of 20 companies each studying the same thing and not sharing the results, they’ll be able to see each other’s findings and build upon the results more quickly. The drug companies have realized this is in their interest, and more are signing up.”
The other actions that Biden would like to pursue include:
- Coordinating pilots with providers and electronic health record vendors to make it easier for cancer patients to share copies of their records for their own care coordination or data donation to research.
- Ensuring individuals understand their rights to direct their data where they want it to go, helping put them in control of their health and care.
- Creating the ability for patients to have all of their information in one accessible location. At the patient’s direction, clinical information would automatically be sent to this location and patients would be able to easily share their data from the location with providers, family or researchers.
- Implementing a rapid standards adoption process for medical data similar to the standards used for clinical data.
- Promoting the adoption of interoperable electronic health system through effective incentives and contracting requirements.
Biden also points to the launch this summer of NCI’s Genomic Data Commons, developed by the University of Chicago, through which researchers can currently access raw genomic and clinical data for more than 32,000 patients, with that number of records continuing to grow.
“Increasing the pool of researchers who can access data—and decreasing the time it takes for them to review and find new patterns in that data—is critical to speeding up the development of lifesaving treatments for patients,” he told the president.
When it comes to international cooperation, Biden adds that he would like to see an increase in research and patient data sharing among researchers, institutions, foundations and nations. In addition, he calls for international standardization of data and bio-repositories, so that records “can be easily shared and compared with data from medical centers across the world.”
(This article appears courtesy of our sister publication, Health Data Management)
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