How NICE is ensuring its topic prioritisation decisions are grounded in lived experience

Why do public dialogue at all? In an era when we have more professional expertise, evidence, and data at our disposal than ever before, what use can it have?

It’s a good question. One we should always ask ourselves at the outset of public dialogue work. The simple answer is that public dialogue is a means to an end. It’s a way of helping organisations ground their decisions in the lived experience of people and communities and what works for them. The insights gained are always helpful. Occasionally, they are game changing. In my 30 years of experience of being involved in such projects in health and social care in the UK and internationally, we ignore the results at our peril.

NICE Listens

NICE Listens is a programme of deliberative public engagement. It’s been set up to enable NICE to seek public views on the complex and sometimes controversial issues it must grapple with day-to-day and under ever closer scrutiny.

This year, NICE teamed up with the UK Research and Innovation’s Sciencewise Programme, which I know well. It has just celebrated 20 years as a custodian of good practice, advice and expertise in running public dialogue exercises. It is a sound partnership and one that we should applaud as evidence of NICE’s commitment to involving the public voice in its work and decisions.

Topic prioritisation

As a passionate exponent of public involvement and engagement in health research and care, I was delighted to be asked by NICE to chair the oversight group for NICE Listens’ most recent public dialogue exercise. This focused on how NICE should prioritise topics for the guidance it produces: what are the principles it might use to ensure it focuses its resources and efforts on what matters most to patients, carers and the health and care system? The role of such an oversight group is not to hold the pen that writes the final report. But to guide and advise on the way the public dialogue is run. It aims to ensure that the engagement is done in such a way that the results will be credible to others, especially colleagues who will be expected to use them in their future considerations.

One of the strengths of this exercise was that we had such a diverse and engaged oversight group which brought together patient representatives, lay members, academics, colleagues from across health and social care, industry, NICE staff, policy thinktanks, government, and arms-length bodies. I would like to thank them for their time and input which made my job so much easier and had such an important bearing on how the project unfolded.

Collectively the oversight group:

• ensured rigorous review of each stage of the project

• helped the team navigate challenges and identify opportunities

• made connections for them to follow-up

• sense-checked the findings.

Working with the provider Thinks Insights & Strategy, we helped ensure good geographical coverage, with 56 people in 4 locations across England (Plymouth, London, Preston and Birmingham) - recognising that no public dialogue exercise has unlimited resources.

Guiding principles

The result of the work is a set of 8 principles representing the values and criteria that participants think should underpin NICE’s prioritisation decisions. And selfishly, given my background, I am delighted that one of the principles is for NICE to reflect a broader definition of evidence and to take a more proactive role in directing the creation of evidence. I am pleased NICE is already integrating these principles in the development of its decision-framework on prioritisation. The principles will inform the deliberations of NICE’s newly appointed prioritisation board which will decide which health and care topics are selected for guidance in the future.

Find more out about public dialogue in this short video from Think Insights and Strategy.

Visit our NICE Listens web page.