Why a group of health systems just agreed to share precision medicine data with each other

3D medical background with DNA strand
Collaboration is crucial to effective data sharing that is central to precision medicine. (kirstypargeter/iStock/Getty Images Plus/Getty Images)

If precision medicine is really going to be the panacea experts have promised, it'll be because health providers agreed to play nice with each other.

That's why Thomas D. Brown, M.D., executive director of the Swedish Cancer Institute in Seattle, said his organization jumped into a new Precision Medicine Council convened by tech company Syapse. The council also includes Henry Ford Health System, Dignity Health, Catholic Health Initiatives, Aurora Health Care and the University of Miami Health System. 

Brown, whose institute is a part of Providence St. Joseph Health, said big-name providers that use similar technology systems will be central to building the massive and diverse data sets needed to allow researchers to find useful needles in the proverbial genomic haystack.

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"The council is intended to share best practices or share practices in a field that's rapidly evolving," Brown told FierceHealthcare in an interview. "People have taken different approaches in assembling precision medicine programs and we've each learned certain things along the way." 

Thomas Brown Swedish Cancer Institute
Thomas D. Brown (Swedish Health)

RELATED: How some major health systems are overcoming the barriers to launching precision medicine programs 

Bringing together a team of large health systems could unite information on "not just thousands of patients, but arguably millions of patients" to advance genomic research and treatment options. 

For example, having a large data set for a rare condition can enhance clinical trials and drive potential breakthroughs, Brown said. 

That same philosophy drives the National Institutes of Health's All of Us research program, which aims to collect data on 1 million patients in the next five years. The program just rolled out nationwide enrollment last month

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Having a robust data set is also crucial as genomics becomes more granular and moves into new focuses for study, Brown said. At present, much of the research and treatment in precision medicine is focused on DNA mutations, particularly in tumors for oncology care, but more researchers diving into changes in RNA and, eventually, in protein expression, he said. 

"Changes in protein expression are the most downstream result," he said. "Proteomics...really, in some ways, is where ultimately most of the attention will be." 

Precision medicine programs do face some challenges, however. Patients, for example, don't fully understand what it can do for them. A survey of about 1,000 patients from the Personalized Medicine Coalition released last month found that two-thirds (66%) had not heard of precision medicine before. 

Brown said he compares the biology of patients' tumors to fingerprints—each one is unique—when discussing genomics options with them. The real challenge can be tempering patients' expectations on how much precision medicine can do for them. 

For example, Brown's team did genome sequencing for a patient whose tumor had an "unusual malignancy," but the results came back with no known mutations that could lead to new treatment options or better care management. 

"I'm careful to always emphasize that this information can help, it can complement, and sometimes it can, even in a very specific way, direct treatment," Brown said. "But oftentimes it doesn't."