Patient and public involvement policy

Download a PDF version of the Patient and Public Involvement Policy

Key principles

1. NICE's approach to patient and public involvement is based on two key principles:

• that lay people, and organisations representing their interests, have opportunities to contribute to developing NICE guidance and quality standards, and support their implementation, and
• that, because of this contribution, our guidance and other products have a greater patient, carer or community focus and relevance.

Introduction

2. Since 1999 NICE has worked to involve patients, carers and the public, including voluntary, charitable and community organisations in its work. Our guidance aims to address issues relevant to patients, carers and the public, reflect their views, and meet their healthcare needs. Involving patients, carers and the public adds value to the discussions of the independent committees and working groups that develop NICE guidance. Members of these groups have commented on the importance of this involvement:

‘Involvement of patients focused on the humanity of the topic and an orientation to patient experiences‘, Chair of NICE guideline development group

‘We were the group's conscience', Lay Guideline Development Group member, 2008

The value of this patient, public and carer involvement has been shown many times in the guidance NICE has produced. NICE is committed to continuing and developing its patient and public involvement work, a commitment underpinned by this policy.

3. This policy:

• sets out NICE's commitment and approaches to patient and public involvement
• outlines the underlying principles of NICE's approach to involving lay people
• explains the support available to lay people and organisations involved with NICE's work.

Background

4. NICE develops national guidance on promoting good health and preventing and treating ill health. NICE guidance covers a range of areas including health technologies, clinical practice, and public health. NICE guidance aims to improve quality by providing health and social care professionals, and patients and the public, with the information they need to make decisions about treatment and care.

5. All NICE guidance is based on the best available evidence. We develop all our guidance by considering the research on different types of treatment, interventions and care and how well they work.

6. NHS Evidence is a service provided by NICE which enables people across the NHS and the wider public health & social care sectors to access clinical and non-clinical evidence and information of the highest quality. NHS Evidence has a formal accreditation programme to recognise guidance producers that reach the highest standards - successful organisations are awarded an accreditation mark. This ensures that people can readily identify the most trusted sources of evidence, and promotes the quality of guidance production.

7. Patients, carers and the public can be involved directly in producing or promoting our guidance, quality standards^[1] and other products as formal members of our committees and working groups. They can also be involved in the NICE's work by commenting, through their organisations, on draft versions of our guidance scopes and draft recommendations, and by submitting evidence.

NICE commitment to patient, carer and public involvement

8. NICE is committed to:

• producing clinical guidance for the NHS that focuses on the patient
• producing public health guidance that focuses on the public's needs or the needs of specific groups or communities
• ensuring other activities, such as quality standards and the Quality and Outcomes Framework, involve and focus on patients and the public
• ensuring that all NICE advisory committees and working groups have at least two lay members (patients, carers or members of the public)
• providing opportunities for patients and the public to give evidence and testimony that can inform the development of our guidance and quality standards
• involving lay people in its corporate decisions
• offering support and training to lay people who contribute to NICE's work
• offering payment to lay members of NICE advisory committees and working groups in recognition of their contribution
• making its guidance available in language and formats suitable for patients, carers and the public
• working with patients, carers, communities, voluntary and charitable organisations to promote our guidance and to help people access the services, care and treatment NICE has recommended
• engaging with groups protected by equality legislation to ensure their views are heard, and that issues of equality are considered in developing its guidance
• reviewing the processes and methods used to involve lay people in its work.

Principles of patient, carer and public involvement

9. NICE's approach to patient and public involvement is based on two key principles:

• that lay people, and organisations representing their interests, have opportunities to contribute to developing NICE guidance and quality standards, and support their implementation, and
• that, because of this contribution, our guidance and other products have a greater patient, carer or community focus and relevance.

10. Involving lay people is integral to NICE's approach to developing guidance, quality standards and other products. Our methods and processes for involving lay people are based on the best available evidence, and on extensive practical experience. We have adopted a flexible model of involvement that allows us to develop different approaches for new areas of NICE work. This flexibility allows for the most effective patient and public input.

11. Our approach reflects policy initiatives to involve patients and the public across the NHS and social care. These initiatives include:

• ‘Equity and excellence: liberating the NHS' (Department of Health, 2010a)
• NHS Constitution (Department of Health, 2009)
• ‘Putting people at the heart of care' (Department of Health, 2009)
• ‘Essential Standards of Quality and Safety' (Care Quality Commission, 2010b)

Opportunities for patient, carer and public involvement

12. There are many opportunities for lay people, and the organisations that represent them, to be involved with NICE's work. There are opportunities across all of NICE's work programmes and associated advisory committees and working groups.

NICE is committed to openness and transparency in its work. To ensure this, each NICE work programme has published process and methods guides that detail how NICE goes about its work. These documents, and more information about each of the programmes, can be found using the links below:

NICE guidance:

• Developing NICE clinical guidelines
• Diagnostics Assessment Programme
• Developing NICE interventional procedures guidance
• Medical Technologies Evaluation Programme
• Developing NICE public health guidance
• Developing NICE technology appraisals guidance

Other activities:

• Citizens Council
• Putting guidance into practice
• NHS Evidence
• Quality and Outcomes Framework
• Quality standards
• Research and development

13. To support the involvement of patients, carers and other lay people, NICE has developed a series of guides that explain how individuals and organisations can help us develop guidance. These are available on the website.^[2]

14. When developing guidance, NICE includes national charitable and not-for-profit (third sector) organisations as stakeholders in its work. As a registered stakeholder, an organisation can:

• comment on draft guidance recommendations and quality standards during development
• contribute to new and revised methods and process guides across NICE's work programmes, and the accompanying lay factsheets
• contribute evidence, experience or commentary, from a lay perspective, to inform the scope and development of the guidance
• help develop and refine NICE's Equality Scheme
• help identify people who could contribute directly to developing the guidance.

15. We advertise openly for individual lay people to join our independent committees and working groups. Each group is expected to have at least two members who can provide a lay point of view. Some committees and groups also invite individual lay people to attend a meeting as an expert on a particular treatment, intervention, health issue, condition or disability.

16. The Citizens Council^[3] has 30 members recruited to reflect the diversity of the adult population in England and Wales. Members are asked for their views on specific moral or ethical questions important to NICE. These considerations form the ‘social values' that underpin NICE's work but do not constitute guidance to the NHS.

Support for patient, carer and public involvement

17. NICE recognises the need to support patient, carer and public involvement. This section describes features of the support infrastructure.

Support for lay people (organisations and individuals)

18. The Patient and Public Involvement Programme (PPIP) is a team at NICE that develops and supports patient, carer and public involvement. The PPIP:

• develops, implements and reviews methodologies 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.

19. Support from the PPIP ranges from informal telephone and email advice to training workshops. The PPIP supports individual patients, carers and lay members as well as voluntary, charitable and community organisations involved with NICE's work.

20. In addition, an independent group, Patient Involved in NICE (PIN), exists to provide organisations who engage with NICE with a system of mutual support and information sharing, and to act as a ‘critical friend' to NICE. PIN also acts to raise the profile of third sector organisations in their interactions with NICE.

Support for the Citizens Council

21. The Citizens Council project is managed by the NICE Research and Development programme. The Citizens Council Committee on behalf of the NICE Board, sets the question that the Council discusses and decides how the Council's advice should be used.

Payments for lay involvement

22. All lay members of NICE's committees and working groups are offered an attendance payment for each meeting they come to, as well as their travel and subsistence expenses, and a contribution to childcare or other carer costs, where applicable^[4].

Evaluation and development

23. NICE recognises that patient, carer and public involvement can always be improved. We aim to develop new, expanded and improved opportunities, processes and methods for involving patients, carers and the public in the following ways:

• to ensure that new programmes of work and new products (such as social care) integrate opportunities for lay involvement and lay people's views and experiences in new methodologies and processes
• to take account of the views of diverse populations by reflecting their needs and points of view in guidance and standards.
• to use clear methodologies to collect information on lay people's views and experiences
• to support opportunities for involving patients, carers and the public in promoting NICE guidance and other products
• to strengthen the relationship with voluntary, charitable and other third sector organisations, and with the Patients Involved in NICE (PIN) group
• to share lessons learned from involving patients, carers and the public across different NICE's work programmes
• to embed the concept of shared decision-making in NICE's approach, and to explore patient decision aids^[5] as a way to engage more lay people with our guidance.
• to review the format, content and communication of our written information so it better meets the needs of patients, carers and the public.
• to continue to collect evidence of the impact of lay involvement in developing NICE guidance, quality standards and other products.
• to further develop a web presence specifically for patients, carers and members of the public.
• to consider how to engage with groups of people that cannot take part directly in our committees and working groups, such as children and young people under 16 and people with communication difficulties.
• to continue to develop processes and methods to evaluate the successes and limitations of patient, carer and public involvement work at NICE.

[1] NICE quality standards are a set of specific, concise statements that act as markers of high-quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions

[2] Developing NICE guidance

[3] Citizens Council

[4] Attendance payments and reimbursable expenses are subject to the usual tax and benefit rules that apply to earned income.

[5] Patient decision aids are tools to help patients and their doctors/nurses make informed & personalised decisions about different treatment options.