In his first few months since starting as executive director of the Health Data Consortium, Chris Boone has taken the group known mainly for staging the Health Datapalooza happenings into the realm of serious Capitol Hill lobbying.
But Boone, 35 -- a former health IT consultant and executive with a specialty in informatics and a former member of the federal Health IT Policy Committee -- doesn't want to call it lobbying, even though the consortium hired a registered lobbyist in 2014, Lauren Ellis.
"We want to educate folks," Boone, who joined the consortium in October, told SearchHealthIT. "We represent the intersection of health data and policy, the policy that drives innovation."
Health Datapalooza still going strong
Health Datapalooza, set this year for May 31-June 3 in Washington, D.C., showcases health IT innovation, developer competitions and high-octane speakers such as Bruce Broussard, president and CEO at Humana; Andy Slavitt, acting administrator at CMS; and Sylvia Mathews Burwell, secretary of the U.S. Department of Health & Human Services.
Two-time Health Datapalooza attendee David Harlow, a Boston lawyer and health IT blogger, recalled seeing former U.S. Chief Technology Officer Todd Park speak at the show. "Seeing a senior official practically jump up and down as he detailed the government's open data initiatives, closing with, 'God bless the United States of America! God bless you! May the Force be with you! Rock on!' was definitely a highlight," Harlow said. "Lobbying is probably a natural outgrowth of what the group has done to date."
TechTarget, the publisher of SearchHealthIT, is a media partner for the 2015 Health Datapalooza event.
More data liberation than interoperability
Meanwhile, as Boone explained it, while the three-year-old consortium supports health IT interoperability, its mission is distinct from that buzzword.
The consortium works to open up troves of health data housed at academic medical centers, universities and research facilities to foster cross-sector collaboration on medical research, such as between pharmaceutical companies and healthcare systems.
One big goal is to make more clinical trial data accessible to researchers so that results are more readily reproducible, Boone said.
"For us, it's about data access, availability and liquidity," he said.
Open Medicare data on legislative agenda
The consortium also has specific legislative goals on its agenda in the short term, particularly the Medicare Data Access for Transparency and Accountability Act, which would make all Medicare claims public, including data on payments to service providers and suppliers.
In general, Boone said the consortium wants to make open as many CMS data sets as possible so health professionals and consumers can more readily gauge quality and price variations across providers.
The bill's language is included in a larger appropriations measure that the House Ways and Means health subcommittee plans to move forward this year, Politico has reported.
The consortium plans to regularly file comments on health legislation, Boone said. "We will have a voice in it in terms of advocacy on behalf of the data," he said.
On health data privacy issues, Boone said the consortium sees "a balance between privacy and research and innovation." He said several studies have indicated that patients will often waive some privacy rights if they think their medical data will help move research forward for a larger social good.
Precision medicine stems from big data
Boone, a believer in big data's potential to transform healthcare, also sees freer availability of health data as a key tool for precision, or personalized, medicine.
While genomic and specialized biological data are the building blocks for the individually targeted approach of precision medicine, one perhaps overlooked aspect of this emerging field is using big data to account for environmental issues, such as poverty and its often-attendant problems of poor childhood nutrition and lack of exercise, Boone said.
"The ability to look at individual variability is critical," he said.
Boone divides his time between his hometown of Dallas and Washington, D.C., where the consortium and its small full-time staff of four is based.
The consortium's more than two dozen organizational members form an eclectic group. They include tech giants such as Hewlett-Packard; EHR vendors such NextGen Healthcare Information Systems LLC; the Robert Wood Johnson Foundation; the American Health Information Management Association; and Boone's previous employer, the health consultancy Avalere Health LLC.
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