LYMEPOLICYWONK: National Guidelines Clearinghouse–Listen Up
We are waiting for the final resolution of the National Guidelines Clearinghouse (NGC) determination regarding whether they will pull the outdated IDSA guidelines from their website. Members of both the House of Representatives and the Senate have called for their removal. If you haven’t signed our petition calling for this, please do. We have over 19,000 signatures on it so far. Our understanding is that the IDSA listing on the NGC is now being reviewed by higher ups on the organizational chart, namely the Agency for Healthcare Research and Quality (AHRQ)). Meanwhile, the NGC is calling for public comments on their guideline inclusion policy. We sent off our list today. Here’s the long and short of it.
For Lyme patients, a key issue is how guidelines that conflict should be managed. We believe the list below, is a good start:
- Groups that are directly impacted by guideline recommendations (patients and primary care physicians) should be part of the process and have a meaningful seat at the table.
- Large specialty groups should change the membership of the guidelines panel from one revision to the next.
- Guidelines should be required to be revised within 5 years of their issue date
- Guideline reports should not be issued unanimously unless all members fully agree to all sections. Alternate interpretations and viewpoints should be recorded and issued along with the majority opinions.
- When conflicting guidelines exist, this should be acknowledged in the guidelines, attempts to reconcile the conflicting guidelines should be documented together with the rationale for the recommendation.
- All guidelines should recommend that physicians advise patients, as part of an informed consent process, when there are divergent viewpoints and treatment options.
- Guidelines should identify gaps in the evidence base that future research should address.
- In the absence of a strong evidence base, guidelines should not unduly constrain the exercise of clinical discretion by physicians or the exercise of evidence-based informed autonomous consent by patients.
We believe that patient participation in guideline development is essential to ensure that guidelines address the issues that are important to patients and are directed toward improving the patient’s quality of life.
You can sign the petition here.
The background for the NGC petition is in a prior blog post.