Joint replacements are the #1 expenditure of Medicare. The process of approving these medical devices is flawed according to the Institute of Medicine. It is time for patients' voices to be heard as stakeholders and for public support for increased medical device industry accountability and heightened protections for patients. Post-market registry. Product warranty. Patient/consumer stakeholder equity. Rescind industry pre-emptions/entitlements. All clinical trials must report all data.
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Thursday, April 12, 2012

U.S. News, TEDMED & "Give us our damned data"

Our Challenge to TEDMED  (FiDA blogger's bolding)

April 10, 2012  U.S. News - Health
Take away the 25 percent or so of U.S. adults that don't use the internet. At least 80 percent of those who remain, according to the latest survey by the Pew Internet & American Life Project, use it to look up health information. As medical care becomes more complicated and face-to-face time with caregivers more fraught, the percentage of information-seekers will surely grow.
But they may not get the help they need. Most people don't understand enough about health and medicine to make sense of the information they find. This is such a major concern that policy makers made improving health literacy their top health information priority in Healthy People 2020, the nation's leading health objectives for the decade. Another key objective is to improve the quality of health information on the web, because so much of the information floating through the ethernet is meaningless, confusing or just plain wrong.
You only have to look at our staff bios to see how seriously we at U.S. News take health data. We're actively working on a way to bring clarity to the individual health insurance market, by creating a web-based tool that will help users pick plans that best meet their needs. We've recently joined Consumers Union, the American Institute for Research and the University of Maryland in a Health Insurance Literacy Project designed to throw a rope to people drowning in incomprehensible health plan jargon.
So this evening we'll be looking on with interest, and some issues, as health information takes center stage at the Kennedy Center in Washington, D.C. The occasion is the annual TEDMED gathering of medical luminaries, whose traditional mission has been to wow attendees with quirkily brilliant ideas that display the convergence of technology, entertainment, and design (the TED part of the name).
This year's goal is more down to earth. TEDMED's new owner, Jay Walker, founder of, moved the meeting from San Diego to the nation's capital to get researchers, government agencies, and industry as collaborators--he wants to transform an idea incubator into a platform for change. "This is a spectacular opportunity to take TEDMED and grow it into something important for the nation and the world," Walker says.
His proposed vehicle, Great Challenges, will enlist TEDMED's high-powered attendees to tackle equally high-powered health problems. Funded by the Robert Wood Johnson Foundation, 50 designated advocates will stump for votes at TEDMED on behalf of each one's challenge, such as making medical innovation more affordable, better managing chronic diseases, ending obesity and coming to grips with end-of-life care. TEDMED attendees will winnow the list to 20 and then Walker and his team will promote ongoing discussions on TV and webinars. The forum will be grandly public as opposed to small knots of individuals who zapped each other with energy in bars and hallways in TEDMEDs of old.
I was invited by Robert Wood Johnson to come to the previous TEDMED to observe, at foundation expense, sessions that helped define the roster of challenges that ultimately emerged. Encouragingly, seven of the 50 focus on aspects of medical data, such as the tension between data transparency and privacy, the imperative to improve communication between doctors and patients, and improving the quality of medical evidence.
What's missing, though, is the challenge to provide health consumers with the clear, trustworthy information they need if they are to make meaningful choices about where to get medical care—and from whom. Todd Park, the Obama Administration's recently named chief technology officer, likes to talk about "liberating the data" and putting it to work for patients and their families. Barring a last-minute change, no one will be officially lobbying for this at the Kennedy Center.
We'll advocate for it here. It's supremely ironic, in a world where experts coin terms like patient-centered care, that something so important—giving consumers the decision-support tools they so desperately desire—is so often overlooked.

JOLEEN CHAMBERS of TX 12:22PM April 12, 2012

TEDMED 2012 did not include patients and patient advocates. There is no portal for patients to participate on the dias without an invitation or as audience members unless they are trust-fund babies. This effectively directs the conversation to subjects that distract from this very real and offensive oversight. I am grateful to US News and this reporter for highlighting the need for providing the consumer with accessible/trustworthy healthcare data. Business providers are in the TEDMED room and the patient is not in the center-no matter how many times they say the mantra "patient-centered"!

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