Public involvement programme

The public involvement programme (PIP) at NICE ensures there are opportunities for patients, carers and the public to participate meaningfully in our activities.

The programme includes a range of activities, such as:

  • The development, implementation and routine review of NICE’s approach to working with lay people.
  • Working with external organisations to support their involvement in developing and implementing NICE guidance.
  • Providing information, training and support to individual lay people who are interested in, or contribute directly to, NICE's work.
  • Offering advice to guidance teams on relevant patient and public issues.
  • Evaluating patient, carer and public involvement in NICE activities.

Take a look at the video to find out more:

Alt text

Highlights of 2016-17:

This year the PIP team has:

Improving how NICE works with the public

This year we reviewed how NICE involves patients and the public in our work, and identified the steps we should take to improve this. 

Information gathered from a literature review, public survey and workshop helped us to draft proposals for improving how patients and the public can contribute to NICE guidance and standards. These proposals included:

  • Involving people earlier and keeping them involved throughout the development process.
  • Recruiting a pool of people with knowledge and experience of specific conditions or services who can be called upon as needed.
  • Introducing a formal feedback process so that people who help develop our guidance and standards are aware of the impact of their contribution.
  • Making better use of social media to communicate with people about our guidance and standards, and to make it easier for them to communicate with us.

The proposals were subject to public consultation for 3 months from 01 December 2016 to 28 February 2017. 117 responses were received.

Supporting shared decision making

In June 2016, we held the 3rd meeting of the NICE shared decision making collaborative.

Shared decision making starts with the conversation between the person receiving care and the person delivering care. It places people at the centre of decisions about their own treatment and care.

The 2016 shared decision making collaborative meeting brought together key academics, policy makers, professional organisations, voluntary sector organisations, arm’s length bodies and individuals with an interest in patients and professionals making decisions about care together.  

The meeting built on themes identified the 2015 consensus statement. Members of the collaborative are now working towards their short-term intentions and long-term ambitions outlined in the action plan.

An example of these is a project with NHS England to ensure that shared decision making is embedded in all ongoing work within improvement programmes to support the wider NHS, such as the general practice (GP) development programme

Important feedback

Any lay member who leaves a NICE committee, and all patient experts who give testimony to our committees are invited to complete an exit questionnaire. People are asked to describe their overall experience of working with us, and whether they felt the support they received was sufficient.

We reviewed feedback from 26 people. And found the majority rated their experience as “excellent” or “good”.

One lay member said:

"Being involved helped me to feel that having a cancer diagnosis is not the end of the world. Being in a privileged position of contributing to something which has affected me is something I feel very proud of."

Now that you've finished this page we think you might be interested in reading about 'Centre for guidleines' or 'NICE in the news'