stakeholder

Abstract: This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when...

Stakeholder submissions and NICE responses This thread is for discussion of the published tables of stakeholders submissions to the NICE ME/CFS guideline draft, which also include responses from NICE. The submissions were made by stakeholders in December 2020. These tables with both the...

Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique https://onlinelibrary.wiley.com/doi/abs/10.1002/msc.1430 (not yet available on sci-hub)

I thought it might be useful to collate this information in a thread. Perhaps keep the discussion of the guideline group in general to another thread, such as https://www.s4me.info/threads/nice-guideline-review-a-list-of-appointees-to-the-me-cfs-guideline-committee-has-now-been-published.6197...

Just received notice that NICE have published their final scope for their review of the diagnosis and management guidelines. Final scope can be viewed here, https://www.nice.org.uk/guidance/gid-ng10091/documents/final-scope Stakeholder comments and responses from NICE can be viewed here...

https://valerieeliotsmith.com/2018/09/28/karina-hansen-news-a-battle-with-nice-the-uks-national-institute-for-health-and-care-excellence/#comments Valerie describes how her organisation “ Law and Health” was first accepted then turned down as a stakeholder in the Nice review process. EDIT...

I've put both a report of my impressions of the meeting, and my list of points to raise, into this blog post. http://sallyjustme.blogspot.co.uk/2018/01/nice-stakeholder-meeting-for-cg53.html Both items also exist as "Notes" on my Facebook wall..... And now I need to sleep... xx

I was wondering if anyone knows how a NICE stakeholder meeting works? I am guessing that our “CFS/ME” one will be well attended, so I’m wondering what opportunity there might be for those present to express concerns? I have been told that patient concerns are generally taken very seriously...

For reference really. Not only are there a lot of psychs and BPS influences there, but some others seem like strange groups to be stakeholders. Original list at https://www.nice.org.uk/guidance/cg53/documents/chronic-fatigue-syndrome-myalgic-encephalomyelitis-list-of-stakeholders4 ETA...

I've heard that NICE have sent invites out to Stakeholder groups for a "Guideline stakeholder engagement workshop" to be held in January 2018. This is for the CFS/ME Diagnosis and Management Guideline (October 2020) Any members of registered Stakeholder groups here and anyone attending?