Dr Marcia Kelson, Director, National Guidelines and Audit Patient Involvement Unit

The National Guidelines and Audit Patient Involvement Unit, launched by the National Institute for Clinical Excellence (NICE) this month, supports patient and carer involvement in the development of NICE clinical guideline and audit projects.

It is based at the College of Health, a national charity that promotes patient interests in the NHS. The College of Health has a national reputation for promoting patient involvement in the NHS,1 and specifically in relation to clinical audit2 and clinical guidelines work.3

In recent years, successive NHS policy documents have emphasised a need for patient, carer and public involvement, not only in an individual's own treatment, but also at a more collective level, in healthcare policy and planning.

The NHS Plan focuses on providing services based around the needs of patients, rather than organisations:

'NHS care has to be shaped around the convenience and concerns of patients. Patients must have more say in their own treatment and more influence over the way the NHS works.' 4

These messages have been reinforced by the recent Bristol Royal Infirmary Inquiry Report, which stresses the need for opportunities for public involvement in the planning, organisation and delivery of healthcare which 'must be embedded in the structures of the NHS and permeate all aspects of healthcare', together with access to relevant information.5

NICE is commited to involving those who speak for patients in its work.6 The establishment of the Patient Involvement Unit builds on early advice from the College of Health, contributing to the ongoing development of explicit methods for patient and carer involvement in the NICE guidelines and audit programmes.

The Patient Involvement Unit aims to support audit and guidelines work both within NICE and within and across the six national collaborating centres responsible for developing NICE guideline and audit products.

The Patient Involvement Unit works with NICE to:

  • Advise the NICE guideline and audit teams on patient and carer issues
  • Act as an advisor to the NICE Guidelines Advisory Committee (the committee responsible for validating NICE guideline development processes)
  • Identify patient and carer organisation stakeholders for individual guideline and audit topics
  • Provide advice and support to patient and carer organisations interested in contributing to NICE guideline and audit processes
  • Facilitate interaction between NICE and patient/carer organisations at defined points in the NICE guideline development and audit process

Review NICE guideline and audit processes and products from a patient/carer perspective.

The Patient Involvement Unit works with the collaborating centres to:

  • Suggest methods for involving patients and carers in the work of the centres
  • Assist with the identification and nominations of potential patient and carer participants in different collaborating centre activities
  • Provide technical expertise on appropriate patient and carer involvement methodologies in the development of individual guideline and audit projects
  • Provide advice, support and training to patient/carer representatives actively engaged in collaborating centre activities.

NICE has developed a formal stakeholder consultation process, providing opportunities for organisations and groups to contribute to the development of NICE guidelines or audit advice in which they have a particular interest.

To date, processes for stakeholder involvement have been best developed in terms of opportunities for input to guideline development. For the purposes of clinical guideline development, stakeholders recognised by NICE include:

  • The national patient and carer organisations that represent people whose care is described in the guideline (referred to as 'patient/carer stakeholders')
  • The national organisations that represent the healthcare professionals who are directly providing the services described in the guideline (referred to as 'professional stakeholders')
  • The manufacturers of the drugs or technologies used in the clinical area covered by the guideline and whose interests are likely to be significantly affected by the guideline (referred to as 'commercial stakeholders')
  • A number of primary care organisations and acute trusts – these organisations are invited to act as 'NHS stakeholders' for a particular guideline
  • The Department of Health and the National Assembly for Wales.

All registered stakeholders have the opportunity to:

  • Comment on the draft scope of an individual guideline. (The scope is the document used by NICE to determine the content and boundaries of the guideline which the national collaborating centre will be commissioned to produce.)
  • Submit clinical questions for consideration by the guideline development group.
  • Submit evidence that might not be picked up through the usual literature searches but may be of relevance to the activities of the guideline development group. (A guideline development group is a group of health professionals, researchers and patient/carer representatives convened by a collaborating centre to develop an individual clinical guideline.)
  • Comment on final drafts of the guideline produced by a collaborating centre.

In supporting input from patient/ carer stakeholders, specific functions of the National Guidelines and Audit Patient Involvement Unit include:

  • Identifying patient/carer organisations that NICE will invite to register as a stakeholder in a given guideline or audit topic
  • Facilitating, for each guideline topic, a patient/carer meeting, where organisations registered as patient and carer stakeholders meet with members of the NICE guideline team to hear more about the guideline development process and opportunities for patient/carer involvement
  • Supporting the nomination process used to recruit patient members of guideline development groups. (NICE currently expects guideline development groups to include, where possible, two patient/carer representatives. Patient and carer organisations registered as stakeholders in an individual guideline are invited to nominate people who they think will have the interest, skills, time and experience to participate as members of a guideline development group.)
  • Providing training to guideline development groups and to involved patient/carer representatives

The overall aims for involving patients and carers, either through the NICE stakeholder process or by recruiting patient/carer representatives on to specific project groups, are to:

  • Develop fair, transparent, defensible and effective methods for patient/carer involvement
  • Ensure that patient and carer perspectives are addressed in guideline and audit products commissioned by NICE.

Clinical guidelines are defined as 'systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances.'7

If patients are to make informed decisions about their care, then they, as well as the health professionals caring for them, need access to the information contained in clinical guidelines. Professional versions of NICE guidelines therefore will be complemented by a patient version. The Patient Involvement Unit is contributing to developing guidance on the production of patient versions.

Patient/carer involvement in the NHS is supported by government policy, the Department of Health and many agencies and health service professionals working within the NHS.

However, there has, to date, been a lack of evaluation of patient involvement activities. A final component of the Patient Involvement Unit's work therefore will be try to evaluate what works well, both for NICE and its collaborating centres, in their attempts to develop methods to ensure that patient and carer issues and concerns inform their work, and for the patient or carer representatives involved in the development of NICE guideline and audit products.

Further information about the NICE guidelines and audit programmes and the NICE guidelines stakeholder process can be found on the NICE website: www.nice.org.uk

national guidelines and audit patient involvement unit
Set up 2001
Status/objectives An independent unit within the College of Health, funded by the National Institute for Clinical Excellence (NICE) to advise on and support patient involvement in the development of NICE guidelines and audit products
Funding National Institute for Clinical Excellence
Key personnel Director: Dr Marcia Kelson
  R&D Fellow: Victoria Thomas
  Administrator: Silvia Collard
Contact details Address:

National Guidelines and Audit Patient Involvement Unit,
College of Health,
St Margaret's House,
21 Old Ford Road,
London E2 9PL

  Tel: 020 8983 1225
  Fax: 020 8983 1553
  Email: v.thomas@collegeofhealth.org.uk
  Email:

m.kelson@collegeofhealth.org.uk

The work of the National Guidelines and Audit Patient Involvement Unit is undertaken by the College of Health, with funding from NICE. The views expressed in this article are those of the Patient Involvement Unit and not necessarily those of NICE.

  • See also News in this issue

  1. Kelson M. User Involvement: A guide to developing effective user involvement strategies in the NHS. College of Health, London, 1997.
  2. Kelson M. Promoting Patient Involvement in Clinical Audit: practical guidance on achieving effective involvement. College of Health, London, 1998.
  3. Kelson M. Patient involvement in clinical guideline development - where are we now? Journal of Clinical Governance, 2001. In press.
  4. Secretary of State for Health. The NHS Plan: a plan for investment, a plan for reform. HMSO, London, 2000.
  5. Bristol Royal Infirmary Inquiry. The Report of the Public Inquiry into Children's Heart Surgery at the Bristol Royal Infirmary 1984-1995. Final Report, 2001: summary www.bristol-inquiry.org.uk
  6. National Institute for Clinical Excellence (1999) Clinical Guidelines Programme. Press release 03/11/99.
  7. Field M, Lohr K. Guidelines for Clinical Practice: from development to use. Washington DC National Academy Press, 1992.

Guidelines in Practice, December 2001, Volume 4(12)
© 2001 MGP Ltd
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