The Joseph H. Kanter Family Foundation, a nonprofit organization dedicated to the creation of a National Health Outcomes Data Sharing Network, has launched a challenge designed to solicit ideas for creating a collaborative activist network that would advocate the sharing of healthcare information.
The collaborative activist network will ideally consist of at least five million members, including patients, families, patient advocates, healthcare professionals and the public. Connected through social media, Web 2.0, and other traditional and novel mediums, the network's purpose would be to advocate for the sharing of anonymized data from electronic health records as a tool in better diagnosing and treating illnesses.
The foundation is using Waltham, Mass.-based InnoCentive to facilitate the contest, which will run for 30 days with a guaranteed award of $5,000 for the best submission.
"With information on healthcare so widely available on the internet, it's incredible that actual medical data has not been made available in an aggregated form," said Dwayne Spradlin, CEO of InnoCentive. "The Kanter Family Foundation has an ambitious charter – improving healthcare and empowering patients to be part of their own medical treatment. We're glad to provide our innovation platform as a tool in making this vision a reality."
The Kanter Family Foundation believes that real-world health outcomes data should be aggregated using anonymous information from millions of EHRs. In the organization's estimate, aggregating approximately 50 million records would provide a basis for informed, scientific-based health decisions by the patients and their clinicians.
"Today there is little documentation to provide alternative treatments or procedures. We need a system that helps patients and their doctors understand how to better treat disease," said Joseph H. Kanter, chairman of the Kanter Family Foundation. "Many doctors are merely speculating about a diagnosis. If we can develop a worldwide data sharing network for every treatment and outcome, both patients and doctors will have a better chance to make a more informed decision on which course of treatment to pursue."
"We hope through this challenge, we will spread the word that every treatment and every outcome has to be shared so that we stop the practice of experimenting on patients like guinea pigs. Building on this challenge, we hope to start up an activist network to advocate for replacing trial-and-error medicine with a health system that learns from patient experiences for the benefit of the patients," he added.
"This is so simple, so logical and so powerful in its implementation that it boggles the mind our society has not done this before now," said former Senate Majority Leader George Mitchell (D-ME).
