​Reporting from the second NICE Voluntary & Community Sector Forum

Written by Karen George, Trustee, Thyroid Trust

In January I attended the second meeting of NICE (the National Institute for Health and Care Excellence)'s new Voluntary & Community Sector Forum on behalf of the Thyroid Trust. I was eager to hear what progress had been made since the first meeting in October of last year. 

Once again the session was lead by NICE’s CEO, Sam Roberts, supported by several NICE staff including Victoria Thomas, head of the Public Involvement team. This time there seemed to be even more charities and patient organisations on the call - showing just how important this type of engagement is.

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Feedback from the first meeting showed that what the group wants from NICE is: 

• Advice to be generated more quickly 
• To learn from feedback 
• Feed this into new guidelines / guidance 
• Produce useable advice

Internally NICE has been looking at what transformational change needs to happen within the organisation to facilitate this, and so far have identified the following areas: 

• being more collaborative; 
• removing layers of sign-off; 
• adopting a user-centred approach; 
• re-designing the website 
• being radical  

Sam Roberts, the CEO, acknowledged that a major cultural change was needed within NICE. One major change that has already been implemented is the appointment of a new Chief Medical Officer (CMO) at NICE - Jonathan Benger, who was previously chief medical officer at NHS Digital. NICE is moving towards arranging its guidelines around ‘big disease areas’ and the CMO’s role will incorporate horizon-scanning and identifying the priority framework for NICE. 

The meeting moved on to discuss the scoping of NICE guidelines and what is meant by ‘big disease areas’. NICE uses the ‘Global Burden of Disease’ and looks at quality of life measures in identifying them. However, these have been the same for the past 20 years - e.g diabetes, respiratory, cancer, maternity - and I couldn’t help thinking that perhaps it was time for a review, particularly given the prevalence of auto-immune diseases, the links to other serious illness and their impact on quality of life. A new tool for quantifying health inequality is being developed and will be available via a health inequalities web page.

Following a presentation on the transformation of NICE Guidelines, there was a extensive Q&A session, during which someone asked how NICE decide to review their Guidelines. I was interested to hear that if a patient community feels a particular guideline needs to be reviewed, or it isn’t being applied as it should, they can request a ‘surveillance review’ to initiate the process.

There was acknowledgement from NICE that responding to guideline development can be a big burden for patient organisations, particularly smaller ones, and they suggested that a commercial conversation needs to take place around the value of charity time to ensure that the level of resource is properly recognised. There also needs to be a pro-rata approach so that smaller patient organisations aren’t expected to contribute in the same way as the larger ones who have more resource available to them. 

NICE are reviewing their criteria for prioritisation and looking at where they can have the biggest impact, so considering issues such as burden of care, QoL and resource impact. Women’s health has been identified as a key area to focus on.

To increase effectiveness and efficiency, NICE want to be able to use comments received on one piece of guidance on a different guideline - at present their processes don’t allow this which creates an additional burden for those providing the feedback and for NICE staff. 

In addition NICE are considering moving towards the production of smaller, more targeted updates in future to avoid having to undertake a full review or re-write of an entire guideline.

One of NICE’s primary objectives is to move towards a Shared Decision Making approach where patients, and patient organisations, are as involved as possible, so moving away from a “What’s the matter with you?” approach towards “What matters to you?”.

As part of the move to engage more effectively with patent organisations NICE are keen for their staff to attend meetings of patient groups or volunteer for them. I was quick to put in a bid for someone from NICE to attend one of the Thyroid Trust’s Board meetings or spend some  time volunteering with us - watch this space! 

NOTES
Next meeting - Tuesday 18 April 2023.
In September 2022 the Thyroid Trust were invited to attend a new Voluntary and Community Sector (VCS) Forum being established by NICE (the National Institute for Health and Care Excellence). The inaugural meeting took place on 19th October and Trustee, Karen George, attended on behalf of the Thyroid Trust.