re HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week

["Dave Farber" <farber () gmail com>]

Begin forwarded message:

> From: Chris Holland <frenchy () gmail com>
> Date: July 16, 2018 at 13:00:18 GMT+9
> To: Dave Farber <dave () farber net>
> Cc: ip <ip () listbox com>
> Subject: Re: [IP] HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week
>
> Hi Dave,
>
> For IP if you wish.
>
> Is the title of the article misleadingly alarmist or are they literally looking to actually "delete" data? I get that 
> it might go "offline", but why would need to "delete" anything? Can't we just keep-around all the data until such 
> time we might be able to bring it back online?
>
> The article points out that NGC was operating on $1.2 million a year, which seems like very little money in the first 
> place. It sounds like costs associated with the site are comprised of two things:
>
> - operational cost of editorial "gate-keeping" for the addition of new guidelines, to keep-away financially-motivated 
> guidelines
> - operational cost of running the site itself ... I imagine servers ... bandwidth ... IT costs ...
>
> From the article:
>
> "Nix estimates that the site would cost a “few hundred thousand” dollars per year to maintain even as a static 
> archive."
>
> A static archive would be a decent start, but I'd hate to lose the ability to add new knowledge to the base. Speaking 
> of knowledge ... could Google be potentially be a logical fit to support this effort? It seems well-aligned with many 
> initiatives they've undertaken to promote the sharing of information in the World.
>
> Our priorities should be:
>
> 1) Keep the site online, at least as an archive, and I think that any tech giant should be able to facilitate this.
> 2) Find ways to fund its on-going editorial operations, while finding ways to ensure that they remain as unbiased as 
> possible, especially guarding against financial & political motivations.
>
> -chris
>
>
>
>
>
> > On Sun, Jul 15, 2018 at 9:33 PM, Dave Farber <farber () gmail com> wrote:
> >
> >
> >
> > Begin forwarded message:
> >
> > > From: Richard Forno <rforno () infowarrior org>
> > > Date: July 16, 2018 at 11:24:18 GMT+9
> > > To: Infowarrior List <infowarrior () attrition org>
> > > Cc: Dave Farber <dave () farber net>
> > > Subject: HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week
> > >
> > > HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week
> > >
> > > Experts say the database of carefully curated medical guidelines is one of a kind, used constantly by medical 
> > > professionals, and on July 16 will ‘go dark’ due to budget cuts.
> > >
> > > Jon Campbell
> > > 07.12.18 5:11 AM ET
> > >
> > > The Trump Administration is planning to eliminate a vast trove of medical guidelines that for nearly 20 years has 
> > > been a critical resource for doctors, researchers and others in the medical community.
> > >
> > > Maintained by the Agency for Healthcare Research and Quality [AHRQ], part of the Department of Health and Human 
> > > Services, the database is known as the National Guideline Clearinghouse [NGC], and it’s scheduled to “go dark,” in 
> > > the words of an official there, on July 16.
> > >
> > > Medical guidelines like those compiled by AHRQ aren’t something laypeople spend much time thinking about, but 
> > > experts like Valerie King, a professor in the Department of Family Medicine and Director of Research at the Center 
> > > for Evidence-based Policy at Oregon Health & Science University, said the NGC is perhaps the most important 
> > > repository of evidence-based research available.
> > >
> > > “Guideline.gov was our go-to source, and there is nothing else like it in the world,” King said, referring to the 
> > > URL at which the database is hosted, which the agency says receives about 200,000 visitors per month. “It is a 
> > > singular resource,” King added.
> > >
> > > Medical guidelines are best thought of as cheatsheets for the medical field, compiling the latest research in an 
> > > easy-to use format. When doctors want to know when they should start insulin treatments, or how best to manage an 
> > > HIV patient in unstable housing — even something as mundane as when to start an older patient on a vitamin D 
> > > supplement — they look for the relevant guidelines. The documents are published by a myriad of professional and 
> > > other organizations, and NGC has long been considered among the most comprehensive and reliable repositories in the 
> > > world.
> > >
> > > AHRQ said it’s looking for a partner that can carry on the work of NGC, but that effort hasn’t panned out yet.
> > >
> > > “AHRQ agrees that guidelines play an important role in clinical decision making, but hard decisions had to be made 
> > > about how to use the resources at our disposal,” said AHRQ spokesperson Alison Hunt in an email. The operating 
> > > budget for the NGC last year was $1.2 million, Hunt said, and reductions in funding forced the agency’s hand.
> > >
> > > < - >
> > >
> > > https://www.thedailybeast.com/hhs-plans-to-delete-20-years-of-critical-medical-guidelines-next-week
>
>
>
> -- 
>
> Chris Holland
> http://www.linkedin.com/in/chrisholland
> 310-500-7598
> This message was sent to the list address and trashed, but can be found online.



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