The U.S. Department of Health & Human Services is seeking to cover new ground, and plans to do so by using genomes to improve the quality of American health care.
HHS Secretary Sylvia Mathews Burwell made the announcement on June 3 at this year's Health Datapalooza, an annual conference coordinated by the Health Data Consortium — a group of public and private entities focused on health data. In her remarks, Burwell tied the genomic research to three objectives she’s set for HHS during her time in office: to create policies that attach health provider payments to health outcomes, to synchronize health data for patients and medical providers, and to improve overall care for patients.
In that last objective, Burwell pointed to precision medicine — therapies and medication prescribed based on a patient’s genetics, environment and lifestyles — as a primary area of innovation. Traditional medical care has leveraged a one-size-fits-all approach to delivering health care; however, with personal genome sequencing costing less than $1,000 and continuous advancements in technology, Burwell said she anticipates precision medicine as a future breakthrough.
Popular examples of its success include curing cancerous tumors and in routine molecular testing for patients who suffer from lung and breast cancers, melanoma and leukemia.
“We need to deliver better care. That comes from better communication among providers and consumers who are empowered,” Burwell said. “But it also comes from a network that invests in keeping us healthy before we get sick, creating healthy homes, and using technology and medical breakthroughs like precision medicine.”
The undertaking will be part of the White House’s own Precision Medicine Initiative, unveiled in January, and will draw $215 million for research, development and implementation.
The National Institutes of Health (NIH) will take $130 million of this to form a national research cohort of more than 1 million volunteers. And NIH’s National Cancer Institute will take an additional $70 million to scale its investigation of genomic drivers of cancer.
The last portion is marked for the Food and Drug Administration to create a $10 million research database with $5 million earmarked for the Office of the National Coordinator for Health Information Technology for interoperability and data privacy measures.
White House Chief Data Scientist D.J. Patil, who also promoted the initiative’s ongoing development on June 3, spoke of the program as a way to be more user centric with health — not too different from the way developers and entrepreneurs fashion solutions and products for consumers. Such tactics, he said, would go a long way in improving efficiency and driving change.
PMI Working Group Co-Chair Kathy Hudson — who also serves as the NIH deputy director of science, outreach and policy — said the goal of the cohort is to be as inclusive as possible to generate high value data as participants share progress in research. As such, she said she hoped to find a way all citizens could participate in the endeavor — whether or not the cohort met or exceeded the million person goal.
“I think there is an aspiration that this cohort is going to be so interesting and important that we should provide everybody an opportunity to participate in some way,” Hudson said.
It was noted at the conference that while there is bipartisan momentum, policy changes related to data sharing are necessary so that researches and clinical trial patients have access to latest information. Also, more funding is needed at a congressional level to truly systematize PMI long term.
Hudson invited participation in the ongoing work and said workshop will be video cast. The workshop is scheduled for July 1-2, 2015, and more details can be found at the NIH PMI website.
Jason Shueh is a former staff writer for Government Technology magazine.