Tell the FDA the whole story, please

November 8, 2009 · Filed Under policy issues · 43 Comments

I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…)

So when I saw Jonathan Richman’s tweet the other night, I couldn’t resist it:

Anyone ever seen data on the overall accuracy of medical information found online? Need help for some final stats for #fdasm

Short answer:

No.

Long answer:

The Pew Research Center’s Internet & American Life Project has been reporting on the social impact of the internet since 2000, when “information quality” on health websites was a big part of the conversation. It was the era of wagging fingers, scolding patients for straying too far outside their boundaries, and Pew Internet data was ammunition.

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Meaningful Use: The Elephant IS In The Room

May 18, 2009 · Filed Under general, medical records, policy issues, reforming hc, trends & principles · 12 Comments

Comparative Effectiveness: a comparison of the impact of different options that are available for treating a given medical condition for a particular set of patients. Such studies may compare similar treatments, such as competing drugs, or they may analyze very different approaches, such as surgery and drug therapy. The analysis may focus only on the relative medical benefits and risks of each option, or it may go on to weigh both the costs and the benefits of those options.

I am afraid that by focusing so much on HITECH and on the definition of Meaningful Use and Certification on this blog we have been missing on the most important part of the “ARRA” stimulus package , the initial $1.1 bn. funding of Comparative Effectiveness Research (CER) to be spent by Sep. 2010. Specifically some of the $400 millions to be used at the discretion of the DHHS Secretary that must be allocated to encourage the development and use of clinical registries, clinical data networks, and other forms of electronic health data that can be used to generate or obtain outcomes data. It certainly looks like the national implementation of EHRs may become fully intertwined with CER.

The minimum definition of “Meaningful Use” as defined in ARRA includes e-prescribing, electronic exchange of medical information and interoperability. These are also the necessary elements to start implementing a national CER strategy. There is just too much at stake this time to think it won’t happen.

e-Patients should become informed about the potential impact of CER for future care. Please read the summary of the “Listening Session of the Federal Coordinating Council for Comparative Effectiveness Research” from April 14, 2009 to get a better understanding why we, the patients & patient groups, must get directly involved in helping to develop the CER private/public infrastructure & activities.

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