05 December 2016

Moonlighting for the ‘Thought Police’ Victoria Thomas, head of public involvement at NICE

Victoria talks about plans to improve how NICE works with members of the public.

Victoria Thomas

I’ll never forget the first presentation I gave when I started working at NICE. I stood in front of a group of respected experts, ready to tell them about how and why we were committed to listening to patient voices.

Some looked on with keen interest, others mild indifference. And then one, sitting right next to me muttered under his breath ‘here come the Thought Police’.

I’ve been called many things in my time but this was new. The idea that I was somehow representative of Orwell’s imagined secret police of Oceania seemed a little excessive! It also revealed his ignorance both about Orwell’s terrifying vision, and the purpose of involvement.

In Orwell’s 1984, the Thought Police intervened when anyone challenged 'Big Brother’s' authority and the status quo it represented.

We do just the opposite. We involve people in our work, be that patients, carers, charity workers, etc., to challenge received and accepted wisdom. To ‘speak truth to power’, and to allow us to look at evidence through a fresh lens – that of the person most directly affected by the recommendations we’re making.

Our commitment to hearing patient and public voices is a now routine part of how we develop our guidance and standards. And as we do in all our work, our approach for involving people must also be evidence based.

Focusing on the role of lay people, the term we use to describe members of public who bring personal insight rather than academic or clinical expertise, we have looked at all the relevant evidence of good practice in involvement.

We ran a public survey and held a meeting with many organisations across NHS, social care and public health, asking people to tell us what our priorities should be and if there was anything we could do better.

We also spoke to colleagues working here at NICE to find out what was important to them when supporting lay members.

 We’ve taken all this information and converted it into a set of principles and proposals for how we can improve what we do, and ‘future proof’ the work we do with lay people as NICE continues to change and develop.

NICE is a vastly complex organisation and we want to make sure that, for the lay people who want to work with us, our ‘front door’ is open and welcoming.

We want to make sure that we harness and maintain people’s expertise across our programmes, and let them know what we’ve done with the information they give us.

Our proposals are now out in the public domain and as ever, we want to know what you think!

5 comments

  • NICE has been ahead of most other organizations in involving 'lay people' in it work what comes to mind is Co-production.
    NHS England is currently consulting on it Transforming Participation in Health and Care Policy, although relevant to CCG's and Providers, Section 14U Health and Social Care Act places a duty to promote involvement of each patient and Section 14P the duty to promote the NHS Constitution.

    NICE as a member of the NHS Five Year Forward View Board I feel should reflect in its future guidance why involvement is important by commissioners and providers for patients and carers with support to manage self care of conditions as a equal partner and been seen as a asset and lived skills.
    Having sat on two NICE GDG I can support this consultation going forward as an exemplar of good involvement practice but would comment that NICE Guidelines are not widely (e.g Doctor's surgeries etc) So the NHS Constitution already ensures access to NICE approve treatments and medication, so can we raise awareness to this as an entitlement.

  • Thanks for your comments Francesco. It would be great if you could share your suggestions via the consultation form too (if you haven't already).
    The details are at https://www.nice.org.uk/about/nice-communities/public-involvement/consultation

  • I recently applied to sit on a Guidelines Update committee and was disappointed not to be selected but, of course, understand that the position was offered to someone more suitable. However, I wanted to feedback on the interview process which I found rather daunting and, at times, unprofessional. I was told it was an informal telephone interview, so I wasn't expecting a conference call with three consultants over very crackly lines so I could hardly hear what they were asking me. I anticipated an informal interview would involve me talking a little more about my own experience and motivation, not about my limited experience working on committees. As a lay person, would I be expected to have this experience? Also, I was sent a group email before the interview asking me to confirm availability for forthcoming meetings. Being added to the Committee's group email, led me to believe that the interview was just a formality and that I was, possibly, the only candidate. A second apology email was sent out immediately to the whole group. I replied saying I was surprised to receive the email anyway as I hadn't been appointed, but received no reply. Maybe, I didn't prepare quite so well for the interview because of this. I also received several emails with my name spelled incorrectly. This, I find, inexcusable when it is correct on all my emails and application form. I also had to ask for the result of the interview as the date of the first meeting (which I had asked for when I applied) was only a couple of days away. Looking at the Committee's page on the NICE website, it looks as though these dates have been changed anyway. I have asked for feedback on my interview, and am still waiting.

    If you want a wide range of people to act as Lay People, the application and interview process needs to be looked at. It would be helpful to know what to expect and to be treated a little more respectfully during the process.

    I have commented on the consultation form, but not regarding my experiences. It would like these comments to be considered and taken into account.

    I do still think, however, that it is right and proper to include lay people in your work. We have may have experiences that Health Care Professionals are unaware of but which are, nonetheless, important for the impact they have had on our lives.

  • Hello Rachael. Thank you for your feedback and comments on the consultation. We’re very sorry to hear you didn’t have a positive experience during the recruitment for the guidelines update committee. Our corporate communications team will be in touch shortly to discuss this further and we will also follow up on why you haven’t received feedback on your interview.

  • Thank you for the thorough investigations into what happened in my case. It has reassured me that our views are valued and taken seriously even when they aren't directly related to Guidelines development.

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