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Will changes to NICE processes work for rare diseases?


NICE is asking for feedback on the methods and processes they use to decide which rare disease treatments they fund. We’re asking you to respond to the consultation survey using the online platform before 11:59 pm on 13 October 2021 and share your views.

As we know that NICE listens to the volume of people who respond, sharing your feedback will make a difference. There is a lot of information, which might seem daunting, so we have prepared a document containing responses to all the questions which is based on a thorough review of the multiple documents released by NICE. You can use this to inform your response if needed. This is available below.

NICE consultation response.docx (docx - 55398)

How to complete the survey

You can complete the survey here. There are three consultation documents to comment on:

  • Methods (including questions on valuing the benefits of health technologies and understanding and improving the evidence base)

  • Processes (including questions on alignment, new ways of working and Commercial and Managed Access)

  • Topic selection (including questions on highly specialised technologies routing criteria and the eligibility criteria for devices, diagnostics and digital)

You will also be asked questions on the guidance manual and topic selection manual. All these documents are available for you to download and read from the NICE website.

Please make sure to save your answers as you go when completing the survey. We have heard that sending yourself an email link is not enough and if you don't press save, it takes you back to when you last saved it.

How to use MPS Society's response document

This document is laid out in the exact order and set up of the NICE consultation with potential responses for you to think about, use, build on or ignore.

We also encourage you to respond with "I am unable to answer this question because I am unclear what it is asking" or "I was unable to find the information this question refers to” as this type of response is just as valuable to the consultation.

If you do submit or prepare a different or enhanced response, please share it with us so we can continue to evolve our document.

Background to the consultation

NICE has released this consultation into methods, processes and topic selection for health technology evaluation as part of their 5-year strategy, and are looking into proposals for change. Following the consultation, they plan to publish a new programme manual in January 2022 and to start implementing the new processes and methods from February 2022 onwards.

NICE are interested in hearing your thoughts about:

  • their proposals

  • how they've taken the evidence and considerations into account

  • any potential effects and implications.

Rapid access to health technologies is vital to patients and their families. As health technologies advance, so must their methods and processes for selecting and evaluating them. We want their methods to be fast, flexible, open and responsive to the needs of our community. We are worried that their current proposals will not deliver this. This consultation is an opportunity to make sure the process works for rare diseases.

More information

  • You can find out more about the proposed changes and read the consultation documents on the NICE consultation webpage.

  • This short animation summarises the proposed changes to the health technology evaluation process.

  • This summary document sets out the reasons and next steps for the public consultation.

Please take the time to respond to this consultation, it will make a difference. If you need any help or support get in touch.

Click to download

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