45. Evidence submitted by INVOLVE (PPI
98)
1. INTRODUCTION
INVOLVE is funded by the Department of Health
and is one of the programmes of the National Institute for Health
Research. The INVOLVE group meets four times a year and the membership
includes service users, carers, researchers, research managers
and practitioners from both the voluntary and statutory sectors.
INVOLVE has been promoting active public involvement* in NHS research
for the last 10 years. Since 2001 our remit was extended to include
public health and social care research taking place outside the
NHS.
We believe it is vital for members of the public
to be actively involved in research. Research which reflects the
needs and views of the public in this way, can lead to more relevant
research and is more likely to produce results that can be used
to improve practice in health and social care.
To this end INVOLVE aims to:
— develop strategic alliances with
key organisations
— develop the evidence base for active
public involvement in research
— empower service users, carers, patients
and members of the public to take an active part in research
INVOLVE has a full time Support Unit which undertakes
the practical aspects of the INVOLVE's work. This includes:
— producing guidance and information
on active public involvement in research
— providing advice to researchers,
research managers, research commissioners, and members of the
public on active involvement in research.
— holding conferences and seminars,
and giving talks and workshops for a variety of organisations
Our role is to promote and support involvement
within research rather than service delivery. However, many of
the arguments for the value of public involvement in research
are transferable to public involvement in service delivery more
generally.
Below are our responses to two of the questions
raised by the Committee.
2. What is the purpose of patient and public
involvement?
Over the last 10 years there has been an increasing
emphasis by the Department of Health on a patient centred NHS
and social care services which recognises the contribution patients
and the public can make to both research and service provision.
This has been reflected in various documents, for example: Strengthening
accountability: Involving patients and the public (2003); Creating
a patient led NHS: Delivering the NHS Improvement Plan (2005);
Research Governance Framework for Health and Social Care (2005);
and the Best Research for Best Health: NHS R&D Strategy (2006).
Patients and the public are the end users of
NHS research and services and therefore it is important that they
are at the centre of NHS plans. One of the strongest motives service
users and carers give for getting involved in research, is to
help bring about improvements to health and social care and to
improve existing services and treatments. Patients and the public
can bring a unique perspective, by offering a view from the "outside
looking in", which is different to that provided by health
professionals.
Public involvement can help to:
— identify issues that are important
from a patient perspective;
— influence the way services are planned;
— improve services from a patient perspective;
— improve the experience for people
who receive services; and
— make it more likely that services
are provided in user friendly and acceptable ways.
3. What form of patient and public involvement
is desirable, practical and offers good value for money?
Our experience of public involvement in research,
provides us with an understanding of the nature and scope of public
involvement, which has relevance for public involvement in service
delivery.
The public has been involved in research and
development for a number of years and in a variety of different
ways. For example, this includes:
— identifying and prioritising research
topics;
— being part of research advisory groups
and steering groups;
— undertaking research projects; and
— reporting and communicating research
findings.
Public involvement can range from being consulted
about some aspect of a piece of research, through to collaboration
in a research team, to research which is actively controlled,
directed and managed by the public.
INVOLVE has produced various documents in consultation
with the public and researchers which highlight good practice
in public involvement, as well as practical issues to consider
(eg Hanley, 2004; INVOLVE, 2006; Steel, 2006; Steel, 2004; Tarpey,
2006) There is also an increasing body of literature highlighting
principles of involvement in research (eg Telford, 2004; Faulkner,
2004; SURGE, 2005). Much of this work is transferable to public
involvement in service delivery. For example:
— involving people with direct experience
of a condition or service relevant to the area of work;
— taking into account diversity and
equality issues;
— working with communities and groups;
— allowing time to build relationships;
— negotiating and clarifying levels
and types of involvement of most value;
— offering people a choice about how
they want to be involved;
— involving people as early on in a
project as possible; and
— planning for sufficient time and
resources to support involvement.
Whilst there is a growing acceptance of the
value of public involvement both in research and service delivery,
systematic research to evaluate the nature, scope, cost effectiveness
and impact is relatively limited. As a first step, we are currently
developing a web based database of research to identify research
that has been carried out in this area as well as other research
whose primary focus is a research analysis or reflective analysis
of public involvement in NHS, public health or social care research
(www.invo.org.uk/invoNET.asp). This will help us to gain a better
understanding of the value of different types of involvement.
NOTE:
— *active public involvement
Active involvement in research is different
from simply taking part in a study. It is about research that
is done with, members of the public, not to, about or for them.
When we use the term "public" we mean
this to include:
— patients and potential patients
— informal (unpaid carers)
— people who use health and social
care services
— members of the public who are the
potential recipients of health promotion programmes, public health
programmes and social service interventions
— groups asking for research because
they believe that they have been exposed to potentially harmful
circumstances, products or services organisations that represent
people who use services
Sarah Buckland
Director, INVOLVE
January 2007
4. REFERENCES
Faulkner, A (November 2004) The ethics of survivor
research: Guidelines for the ethical conduct of research carried
out by mental health service users and survivors. Joseph Rowntree
Foundation
Hanley, B et al (2004) Involving the public in
NHS, public health and social care research: Briefing notes for
researchers. INVOLVE.
INVOLVE (2006) Commissioning Guidelines, INVOLVE.
Steel, R (2006) Guide to reimbursing and paying
members of the public actively involved in research. Revised August
2006 INVOLVE.
Steel, R (2004) Involving vulnerable and marginalised
groups in research: A consultation document. INVOLVE.
SURGE (Service User Research Group England) (2005)
Guidance for good practice: Service User Involvement in the UK
Mental Health Research Network. Mental Health Research Network.
Tarpey, M (2006) Why people get involved in health
and social care research: a working paper. INVOLVE.
Telford, R et al (2004) What does it mean to involve
consumers successfully in NHS research? A consensus study, Health
Expectations, 7, page 209-220.
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