Tuesday 16th October, 2012
5:15pm to 5:55pm
Among the sectors that has been most resistant to the type of standards-based information flow so common to our modern society has been the cancer research community. Cancer data of all kinds – from patients’ molecular profiles to their treatment histories to their clinical outcomes – have been trapped within individual research laboratories, physician offices, and academic medical centers. Even within the four walls of a single institution it has been hard to share data—much less between and among the 60+ National Cancer Institute-designated cancer centers, the dozens of community cancer centers, and hundreds of oncologists’ offices across the nation. Meanwhile, patients have soldiered on, often assuming in good faith that researchers and providers were sharing such data for the ‘greater good’…believing all that data would be transformed into information and then into knowledge to accelerate discovery and refine/improve treatment, if not for themselves then for patients who’d follow. No such luck. For decades, cancer research and clinical data has been largely trapped in silos, and efforts to liberate it have faced a host of ‘dragon-like’ technical, cultural and policy hurdles: the vocabularies used in data collection were not standards-based; the researchers hoarded data for their scientific publications and grant applications; the healthcare providers kept the clinical data for competitive advantage; and pharma companies kept it for intellectual capital and patents. Now, cancer patients are awakening to a new day, enabled by numerous technological and societal shifts: the growing amount of health data exchange powered by government-stimulated adoption of EHRs; the thousands of physician- and patient-friendly health ‘apps’ designed for I-Pads and smart phones; the popularity of using ‘Big Data’ as a strategy to improve industrial productivity; and a growing self-awareness that they – the patients themselves – are the sleeping giant of healthcare: slow to be roused but powerful when angered. In the midst of these changes, a new Coalition is forming, comprised of all the participants with a stake in battling cancer. The Coalition concept—unveiled at the February 2012 Institute of Medicine workshop on the ‘crisis’ in cancer informatics – is to slay the technical, cultural and policy dragons with a national network of standards-based data exchange ‘pipes’ through which data can flow, boosted by a social marketing and digital influence campaign to make data-sharing the obvious choice. The Coalition is dedicated to bringing the benefits of science to patients through education and policy change, as well as undertaking practical projects to build, demonstrate and drive adoption of the tools of interoperability. The first project, led by pharma company Sanofi through the CEO Roundtable on Cancer’s Life Sciences Consortium, will contribute de-identified clinical trial data into a freely accessible repository, and it’s hoped that other pharmaceutical companies will follow suit with their own clinical trial data. Future projects will include development of standards that are lacking for data exchange; collection of longitudinal healthcare data from patients through their membership in disease advocacy organizations; and campaigns to change the protocols of government research grants to weave in data-sharing as a requisite of funding. A Coalition Steering Committee has been formed that’s comprised of the key constituencies of the cancer community: patient groups, academic medical centers, policy organizations, Big Pharma companies, Big IT companies, and emerging informatics companies. It’s recognized that no single stakeholder group can act alone, but in concert there is strength and momentum.
Twenty year business executive now dedicated to lung cancer advocacy as CEO of LUNGevity Foundation. bio from Twitter
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