68. Evidence submitted by the National
Institute for Health and Clinical Excellence (PPI 61)
1. SUMMARY
1.1 The National Institute for Health and
Clinical Excellence (NICE) involves a wide range of stakeholders
in the development of its guidance including NHS staff, healthcare
professionals, the academic world, the pharmaceutical and medical
devices industries, patients and carers, and organisations representing
the interests of patients, carers and the public.
1.2 We take a structured approach to our
engagement with patients, carers and the public that enables them
to contribute to the development of NICE guidance and encourages
them to work transparently, alongside other stakeholders.
1.3 NICE has a dedicated policy and a range
of mechanisms for involving patients, carers and the public in
the development, dissemination and implementation of NICE guidance.
Opportunities for involvement are supported by a dedicated team
(the NICE Patient and Public Involvement Programme, PPIP) which
recruits, trains and supports lay contributors (both individuals
and organisations) to NICE guidance.
1.4 The purpose of this memorandum is to
consider how Local Involvement Networks LINks might develop, taking
into account the resources that are potentially available to them
from NICE. We have focussed on the potential for NICE activities
and outputs to influence how LINks should be designed, in the
following areas:
— Remit and area of focus.
— Membership and appointments.
1.5 We recommend the following areas for
action:
1.5.1 National co-ordination (1):
We note from the Committee's terms of reference for this inquiry
that the focus seems to be primarily on local PPI structures.
To ensure that different initiatives inform each other and to
avoid unnecessary duplication of effort, we suggest that local
PPI initiatives should not be considered in isolation, but in
relation to national PPI activity, including NICE PPI activities.
1.5.2 National co-ordination (2):
NICE has already started to develop relationships with PPI forums.
Some forums have used NICE guidance to inform their local quality
assurance work. Some have been proactive in ensuring that the
patient versions of NICE guidance are better disseminated locally
to end users of services. We suggest that the developing relationships
between NICE and patient forums be extended and formalised with
the new LINks.
1.5.3 Remit and area of focus: We
take the view that those who receive services from the NHS should
have access to the best evidence-based care available. We suggest
that NICE guidance recommendations, based as they are on the best
available evidence of both clinical and cost effectiveness, and
incorporated into the Department of Health's core and developmental
standards, are important sources of information for LINks (as
well as other structures such as Overview and Scrutiny Committees)
to inform their activities. NICE guidance can be used by LINks
and others to act as a lever for improving health and social care
locally, and using NICE guidance means local LINks will all be
working to help implement national standards of care, giving their
work an emphasis on equal access to the highest standards of care
for all. Specifically we suggest that LINks are supported to:
— understand the role of NICE
guidance in promoting quality care;
— use the recommendations set
out in NICE guidance to inform how LINks observe and assess the
nature and quality of local services;
— encourage dissemination of
patient versions of NICE guidance to patients at local levels
so that individual patients can use this to inform decisions about
their own care; and
— monitor uptake of NICE guidance
and feedback to NICE and the Healthcare Commission so that this
information can be used to identify both good practice and inconsistencies
in uptake.
1.5.4 Membership and appointments:
We understand that the membership criteria and recruitment processes
for LINks members have not yet been finalised. NICE has developed
open and transparent recruitment procedures for lay vacancies,
supported by job descriptions and person specifications and clear
selection criteria. NICE also offers training and support to patient
groups and individual lay people involved in NICE activities.
NICE would be happy to explore if its processes might be used
by the new LINks initiative to recruit and support new members.
2. WHAT IS
NICE?
The National Institute for Health and Clinical
Excellence (NICE) is the independent organisation responsible
for providing national guidance on promoting good health and preventing
and treating ill health. Further information about the work of
the Institute can be found at www.nice.org.uk.
3. ROLES AND
RESPONSIBILITIES OF
NICE
NICE produces guidance in three areas of health:
— public health—guidance on the
promotion of good health and the prevention of ill health for
those working in the NHS, local authorities and the wider public
and voluntary sector;
— health technologies—guidance
on the use of new and existing medicines, treatments and procedures
within the NHS; and
— Clinical practice—guidance
on the appropriate treatment and care of specific diseases and
conditions within the NHS.
NICE has also set up a programme to help put
NICE guidance into practice. Centrally located staff together
with local implementation consultants:
— ensure intelligent dissemination
to the appropriate target audiences.
— actively engage with the NHS, local
government and the wider community to support implementation of
NICE guidance and evaluate its uptake.
4. PATIENT, CARER
AND PUBLIC
INVOLVEMENT AT
NICE
4.1 Since its inception, the Institute has
taken the approach that those whom its decisions affect are entitled
to express their views on how we go about our work and on the
development of individual pieces of guidance. Groups affected
by our decisions include patients, carers and the public, and
those who speak for them.
4.2 NICE is committed to producing guidance
that:
— meets the needs of patients, carers
and the public; and
— involves patients, carers and the
public in its development.
By working with patients, carers, patient organisations
and the public, NICE aims to produce guidance that addresses patient/carer/public
issues, reflects their views and meets their healthcare needs.
In deciding which clinical treatments or public health strategies
to recommend, a balance has to be drawn between the needs and
wishes of individuals and the groups representing them, against
those of the wider population. This sometimes means treatments
are not recommended because the research evidence suggests they
do not provide sufficient benefit to justify their cost.
4.3 The Institute actively involves patients,
carers and members of the public in the development of all its
guidance. This includes contributing to making the decisions (sometimes
difficult ones) that have to be taken when recommending that the
NHS should offer or refuse specific treatments. Opportunities
for involvement include:
— Patients, carers and the public (both
individuals and organisations) can suggest topics for future NICE
guidance.
— National organisations representing
patients, carer and the public are consulted on draft scopes (the
documents that describe what a piece of guidance will and will
not cover) and draft guidance recommendations.
— NICE advisory committees and working
groups (including the groups that produce NICE clinical guidelines
and public health programme guidance) include at least two, often
more, patient/carer/public members.
— NICE works with patients, carers
and the public to encourage dissemination and implementation of
its guidance.
5. EXISTING COLLABORATION
BETWEEN NICE AND
PATIENT AND
PUBLIC INVOLVEMENT
FORUMS (PPIFS)
5.1 NICE has already developed relationships
with PPI forums, exploring the potential for collaborative working
and working with individual forums to identify ways in which they
can contribute to the development of NICE guidance and encourage
local dissemination and uptake of NICE guidance
5.2 Patient forums have:
— Publicised vacancies for patient,
care and public members of NICE committees, guideline development
groups and public health programme development groups.
— Hosted events for local patient/public
representatives to hear more from NICE and how it produces its
guidance.
— Encouraged local dissemination of
patient versions of NICE guidance to end users of NHS services.
— Used NICE guidance to monitor local
services and promote uptake of NICE recommendations.
6. RECOMMENDATIONS
FOR POTENTIAL
COLLABORATION BETWEEN
NICE AND LINKS
6.1 We note from the Committee's terms of
reference for this inquiry that the focus seems to be primarily
on local PPI structures. To ensure that different initiatives
inform each other and to avoid unnecessary duplication of effort,
we suggest that local PPI initiatives should not be considered
in isolation, but in relation to national PPI activity, including
NICE PPI activities.
6.2 We take the view that those who receive
services from the NHS should have access to the best evidence-based
care available. We suggest that NICE guidance recommendations,
based as they are on the best available evidence of both clinical
and cost effectiveness, and incorporated into the Department of
Health's core and developmental standards, are important sources
of information for LINks (as well as other structures such as
Overview and Scrutiny Committees) to inform their activities.
NICE guidance can be used by LINks and others to act as a lever
for improving health and social care locally, and using NICE guidance
means local LINks will all be working to help implement national
standards of care, giving their work an emphasis on equal access
to the highest standards of care for all. We therefore suggest
that the developing relationships between NICE and PPI forums
be extended and formalised with the new LINks.
6.3 In determining the remit and area of
focus for LINks, there is the potential for LINks to contribute
to the production of NICE guidance, to use NICE guidance to inform
their own activities and to encourage dissemination of patient
versions of NICE guidance to publicise NICE recommendations to
local patient populations. Specifically we suggest that LINks
are supported to:
— understand the role of NICE guidance
in promoting quality care;
— use the recommendations set out in
NICE guidance to inform how LINks observe and assess the nature
and quality of local services;
— encourage dissemination of patient
versions of NICE guidance to patients at local levels so that
individual patients can use this to inform decisions about their
own care;
— engage with their local NICE implementation
consultant; and
— monitor uptake of NICE guidance and
feedback to NICE and the Healthcare Commission so that this information
can be used to identify both good practice and inconsistencies
in uptake.
6.4 We understand that the membership criteria
and recruitment processes for Links members have not yet been
finalised. NICE has developed open and transparent recruitment
procedures for lay vacancies, supported by job descriptions and
person specifications and clear selection criteria. NICE also
offers training and support to patient groups and individual lay
people involved in NICE activities. NICE would be happy to explore
if its processes might be used by the new Links initiative to
recruit and support new members.
7. CONCLUSION
LINks will operate as part of a wider context
which aims to ensure that patients can access the best available
care. To this end, there is potential for LINks to use NICE guidance
to inform their own activities, to support the dissemination of
patient versions of NICE guidance to local patient populations,
and to monitor the implementation of NICE guidance as part of
their quality assurance activities.
NICE submits this memorandum to raise this as
a potential area of focus for LINks activity and to offer to work
collaboratively with LINks to achieve this if it is incorporated
into their remit.
Dr Maria Kelson
National Institute for Health and Clinical Excellence
Jnuary 2007
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