Public Involvement Programme - enabling the public to engage with NICE's work

Patient, carer and public involvement is central to the work of NICE. We have a team dedicated to developing and supporting this, and a whole programme focussed on enabling the public to engage with NICE and influence our guidance and products.

Our patient and public involvement programme (PIP):

  • Develops, implements and reviews processes to identify opportunities for lay involvement in NICE’s work.
  • Provides guidance and support on approaches to lay involvement for NICE’s board, its internal teams, and the external groups NICE commissions to develop its guidance.
  • Works with organisations that represent lay people’s interests to support their involvement in developing and implementing specific guidance or quality standard topics.
  • Provides information, training and support to individual lay people who are interested in or contribute directly to NICE’s work.
  • Contributes to the development of the lay versions of NICE guidance.
  • Offers advice to guidance developers on patient and public issues relevant to the scoping and development of NICE guidance.
  • Evaluates patient, carer and public involvement in NICE activities.

PIP aims to ensure that there are opportunities for lay people, and the organisations that support them, to participate meaningfully in NICE activities, and that those opportunities are appropriately supported. At any one time PIP provides support to between 250 and 300 individual lay committee members.

Contributing to shared decision making

During 2015, PIP played a key role in supporting and taking forward work around shared decision making.  In July, PIP and Keogh Clinical Fellow Aoife Molloy held a meeting of key national and international stakeholders in the field of shared decision making.

The group, known as the Shared Decision Making Collaborative, developed and agreed a statement outlining its commitment to taking forward shared decision making and identifying key areas for development.

Following the meeting PIP was commissioned by NHS England to develop methods and processes for updating existing patient decision aids and to progress other activities identified by the collaborative around NICE’s role in supporting:

  • Shared decision making.
  • The quality assurance of patient decision aids.
  • Working with external partners to embed shared decision making in undergraduate, postgraduate and continuing professional development (CPD) curricula for healthcare professionals.

European initiative to provide information on medicines development

In other international work, PIP sits on the Project Advisory Board for the European Patient Academy on Therapeutic Innovation (EUPATI). EUPATI provides scientifically reliable, objective, comprehensive information to patients on the research and development process of medicines.

It is a patient-centred team of 30 organisations, led by the European Patients’ Forum. It has partners from patient organisations, universities, not-for-profit organisations and experts in patient and public engagement, along with many European pharmaceutical companies.

EUPATI also provides educational resources to increase patients’ capacity to be effective advocates and advisors in clinical trials, with regulatory authorities and on ethics committees. In 2015, PIP presented at EUPATI’s face to face training events and at its national launch events in England and Ireland.

Reaching out to minority ethnic groups

As part of routine business during 2015, PIP identified a wide range of patient, voluntary and community sector groups to register as stakeholders and consultees, and supported them in their interactions with NICE.

The team also conducted 20 outreach visits with 19 patient and voluntary sector groups. The core focus for 2015 was on equalities, particularly BME and faith organisations. Meetings were arranged with the Equalities National Council, Medical Information for Ethnic Minorities (MIEM), the South Asian Health Foundation, and the Black Health Agency. Their work with faith organisations will continue in 2016.