• HHS to wipe its medical guidelines repository

    Asked by Ejourneys on Monday, July 16, 2018

    HHS to wipe its medical guidelines repository

    "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....which the agency says receives about 200,000 visitors per month."

    A team has been saving the data. There's also a clone here:
    https:[email redacted]
    The team posted this:
    Looking for ways to help. Worried that the data will be lost. Do not fear, we have copies. Here is what you need to do:
    1. Call your Congressmen/women
    2. Call your Senator(s)
    3. Call your local politicians
    4. Email all of them
    Say http://guidelines.gov must stay up"

    13 Answers from the Community

    13 answers
    • LiveWithCancer's Avatar

      Nothing like learning about its demise on the day it goes dark. I wonder why the press didn't get up in arms about it when there might have been time to actually do something about it?

      It seems so odd that we were able to fund NIH at billions more than they even requested and can't fund this little (in terms of money needed) database.

      Here's hoping that a foundation or another government agency will pick it up if it is as useful as is claimed. I am glad that the data is being archived so that if someone does pick it up, they won't have to start all over again.

      Thanks for the heads up, Ejourneys! I wrote, but even personal visits to my legislators is a waste of time.

      10 months ago
    • Ejourneys' Avatar

      Saw this tweet this morning:
      "You can also contact AHRQ directly. I'd especially recommend health care practitioners do this, explain how important NGC is for them."

      AHRQ Director Gopal Khanna, MBA

      Acting Dep. Director Francis Chesley Jr, MD

      (I've broken up the phone numbers to keep them from being redacted.)
      Tweet is at

      10 months ago
    • Jalemans' Avatar

      Why are they doing this?

      10 months ago
    • Ejourneys' Avatar

      @Jalemans Funding reductions in the budget. From the article:

      "'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."

      You know, that budget the GOP forced through, which gives massive tax breaks to wealthy and corporations and explodes the deficit -- which is prompting the GOP to plan even more tax breaks and cuts to Medicare, Medicaid, and Social Security:

      Call your members of Congress. Tell them this is not acceptable.
      Full contact info, including field offices if you can't reach DC: https://contactingcongress.org/
      To turn your texts into faxes to them: https://resistbot.io/
      To send them voicemails: http://www.takeastance.us/

      10 months ago
    • LiveWithCancer's Avatar

      @Jalemans, they say it is because funding wasn't approved. Good ol' politics raises its head again.

      I still can't understand why it couldn't have been funded under the extra billions NIH got ... they should have plenty of $$ to fund it if it is so useful to everyone (and with its usefulness and popularity and so many doctors who are members of Congress, why wasn't money allocated for it?)

      I see my oncologist today. If I remember, I'm going to ask him about this. I would have thought that all of the doctors who rely on this information would have been lobbying hard to keep it around. I'm still amazed that so little has been in the news about it. It is relatively cheap to operate based on the benefits derived.

      10 months ago
    • BarbarainBham's Avatar

      FYI, AHRQ manages the database, and it is not the same as the NIH, which is its sister agency under HHS. "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]. . . ."

      The reason given for going dark is a reduced budget, and an estimate of $200,000 a year is given just to keep the database static.

      I'm not sure how "the Trump Administration" got blamed for this, since Congress approves budgets. They say the database info is duplicated by other agencies. As we've talked about before, the Constitution lists national security the President's main responsibility, and I doubt he's even aware of the valuable database in question.

      10 months ago
    • cards7up's Avatar

      Nothing surprises me from this Admin!!!

      10 months ago
    • BarbarainBham's Avatar

      The linked article says Congress said the info is duplicated by other agencies, but that the search system is not the same. To be fair, Guidelines are available in other places, and I would think this is used more by patients than doctors.

      Doctors on top of their fields are members of professional organizations that agree on and publish guidelines and have conferences and journals that keep their members informed. A Google search isn't much trouble compared to the millions LiveWithCancer mentioned being saved.

      Washington, D.C., and Bethesda, Maryland, are full of libraries and databases with articles by physicians about health problems, including guidelines that can be searched.

      10 months ago
    • Ejourneys' Avatar

      Good summary here of what's been and is happening:

      1. The clearinghouse was a tool for medical practitioners more than patients.
      2. No other resource provides (a) the search capability, (b) the vetting capability, or (c) consolidation of information.

      "I would think" doesn't cut it, Barbara.

      Take particular note of the closing section:

      [excerpt start]

      Gidwani-Marszowski, from Stanford, made clear how damaging she thought the NGC shutdown was. “Its shuttering represents a significant loss for the medical community and to the practice of patient care,” she warned. “There is no other site today doing what National Guideline Clearinghouse did in presenting high-quality medical evidence to doctors and to the public.”

      While ECRI plans to launch their replacement by the fall, that will mean the NGC’s former 200,000 visitors per month won’t have a place to easily search for and understand medical guidelines for months.

      Schoelles said ECRI hopes that its replacement website can, eventually, serve medical professionals even better that the NGC did. “If guideline developers are willing to work with us on it, we’d like to work with them to develop clinical pathways and other tools, to better enable physicians to make decisions as new information comes in.” She also explained that, “if we can translate the guidelines and summaries into a machine readable format, then they may be able to be used in real time, not after the patient has gone home.”

      “A number of people are developing fairly sophisticated applications that can interface with electronic health records and some of these might be able to help point physicians to decision support based on the most trustworthy guidelines during the course of their work.” Schoelles hopes they’ll be able to start doing some of this by next year but cautions that “it’ll take time to build out [ECRI’s] informatics team.”

      Despite the many efforts to replace or archive the NGC, however, its shutdown will mean there is no longer a government-run arbiter that’s trusted to serve as an unbiased gatekeeper for and assessor of medical guidelines.

      That might not be so bad if AHRQ would relinquish its hold on the NGC’s content and database, so that 20 years of work summarizing and indexing medical guidelines wouldn’t have to be reproduced. Instead, AHRQ has not only defunded and shutdown the NGC, but it continues to prevent others from making the NGC’s content readily accessible again through its silence.

      [excerpt end]

      The article is from The Sunlight Foundation, a national, nonpartisan, nonprofit organization focused on government transparency.

      10 months ago
    • BarbarainBham's Avatar

      Ejourneys, I told you months ago that my posts here are not part of any debate and I'm not attempting to change your mind, only to offer you information. Therefore, "I would think" statements are perfectly appropriate as I respond to your linked article.

      Specialists have direct sources for Guidelines in their field, and may have been part of developing the Guidelines. Sponsoring organizations for Guidelines always make their Guidelines available on their own websites, so they aren't "lost" even if the search is different.

      10 months ago
    • Ejourneys' Avatar

      Barbara, that is exactly why I posted the information from The Sunlight Foundation. It provides more detailed information, and on this site we try to inform each other about health-related issues. When data provide a correction to what someone "thinks," those data are useful.

      For example, the recent results of the large TailorX study have shown that someone with my Oncotype-DX score would not need chemo. But we didn't have those results four years ago, when I received chemo. Back then, I thought it would benefit me, and I acted on the best available info at the time. It's as though I said "I would think" chemo would make a significant difference. Now I know differently.

      That's not a debate, Barbara. That is learning from the data. That is why I present The Sunlight Foundation's data here, so that we are all better informed.

      Have you been to any cancer conferences? I have. Guidelines are not standardized; they vary across different organizations and across different specialties. Cancer is a multi-modal, multi-specialist disease with multiple risks and comorbidities, and a major challenge is coordinating those specialists. One of the frustrations expressed at ASCO's Cancer Survivorship Symposium, which I attended in February, is that PCPs are not exposed to the same guidelines that oncologists are, and that makes a difference in how they treat patients. (Both PCPs and oncologists attended and presented at this conference.) One of the challenges is getting PCPs the information they need -- often it's information they don't even know exists. Another frustration had to do with the difficulty of navigating the various menus and knowing where to look for guidelines, something the clearinghouse had helped to solve.

      Think of the clearinghouse as Google, or whatever search engine you use. Now take that search engine away. Sure, the data are still out there. How much time do you have available to spend hunting it down?

      At the ASCO conference, Graham Warren (Medical University of South Carolina) said his wife, a PCP assistant, had seen 126 patients by herself over the course of a 12-hour day ("one patient every 5-1/2 minutes for 12 hours with no bathroom break and no lunch"); he said his limit was 72 patients in a day. When he asked for a show of hands, many people indicated that they saw more than 50 patients in a day.

      As I said, I present information here, and I have changed my own thoughts based on data, such as the TailorX results. You are free, of course, to think however you wish.

      10 months ago
    • BarbarainBham's Avatar

      Ejourneys, regarding my attendance at conferences, I worked for and with doctors in teaching hospitals for many years. Those are the same doctors who are doing research and speaking at conferences nationally and internationally, with published reports of their research sometimes leading to changes in Guidelines. Early in my career, I travelled as a Medical Conference Coordinator.

      10 months ago
    • Ejourneys' Avatar

      Then you should know as well as (if not better than) anyone what it means when a centralized resource for medical professionals is eliminated. Given your experience, I'm surprised you assumed it was used mostly by patients, when the evidence indicates the main users had been health care professionals.

      10 months ago

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