Discussion:
[IP] re HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week
Dave Farber
2018-07-16 04:29:06 UTC
Permalink
Date: July 16, 2018 at 13:00:18 GMT+9
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?
- 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 ...
"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.
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
Date: July 16, 2018 at 11:24:18 GMT+9
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.
-------------------------------------------
Archives: https://www.listbox.com/member/archive/247/=now
Modify Your Subscription: https://www.listbox.com/member/?member_id=26461375
Unsubscribe Now: https://www.listbox.com/unsubscribe/?member_id=26461375&id_secret=26461375-c2b8a462&post_id=20180716002919:CC6C9964-88B0-11E8-8687-A91B8F54F402
Powered by Listbox: https://www.listbox.com
Dave Farber
2018-07-16 05:20:32 UTC
Permalink
Date: July 16, 2018 at 13:58:55 GMT+9
Subject: Re: [IP] HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week
I guess they had to make a tough choice between paying for the database orTom Price's charter flights.
https://web.archive.org/web/20180626165023/https://www.guideline.gov/
https://www.nytimes.com/2018/01/10/climate/climate-change-trump.html
https://www.ecowatch.com/climate-change-is-real-website-2440285898.html
https://cis471.blogspot.com/2016/12/backing-up-climate-science-data.html
This message was sent to the list address and trashed, but can be found online.
-------------------------------------------
Archives: https://www.listbox.com/member/archive/247/=now
Modify Your Subscription: https://www.listbox.com/member/?member_id=26461375
Unsubscribe Now: https://www.listbox.com/unsubscribe/?member_id=26461375&id_secret=26461375-c2b8a462&post_id=20180716012043:FA7B1126-88B7-11E8-AF29-DDCFCB624924
Powered by Listbox: https://www.listbox.com
Dave Farber
2018-07-16 07:42:12 UTC
Permalink
Date: July 16, 2018 at 15:53:42 GMT+9
Subject: Re: [IP] re HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week
Prof Farber,
[for IP, should you so deem and comments inline]
Date: July 16, 2018 at 13:00:18 GMT+9
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?
- 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 ...
"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.
Putting it in the hands of a private corporation, like Google, is not acceptable. No matter how well-aligned it is with the "many initiatives they've undertaken to promote the sharing of information in the World".
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.
Do members of this list think that Googe can guard against financial and political motivations, especially given that it needs to report numbers to Wall Street every quarter?
A better suitor would be the Wikimedia foundation or, a new entity. But again, this has its problems. Or what about the European Union, or the United Nations? -- H
--
I’m not sure that I would trust any of the current political entities djf


-------------------------------------------
Archives: https://www.listbox.com/member/archive/247/=now
Modify Your Subscription: https://www.listbox.com/member/?member_id=26461375
Unsubscribe Now: https://www.listbox.com/unsubscribe/?member_id=26461375&id_secret=26461375-c2b8a462&post_id=20180716034221:C445CC5E-88CB-11E8-9123-85F9AF17AC98
Powered by Listbox: https://www.listbox.com

Loading...