MEMORANDUM BY DR MARIAN BARNES, DIRECTOR
OF SOCIAL RESEARCH, DEPT OF SOCIAL POLICY AND SOCIAL WORK, UNIVERSITY
OF BIRMINGHAM
PUBLIC PARTICIPATION IN HEALTH
My perspective on the topic comes from 15 years
involvement in research and development in relation to user involvement
and public participation in health and social care. I am currently
leading work in community involvement in the national evaluation
of Health Action Zones, and have just started a project on public
participation and social exclusion in the ESRC Democracy and Participation
research programme.
CONTEXT
The following factors are important in considering
the nature and purpose of public involvement in health and health
service decision making:
— There is no system of local democratic
accountability in the NHS.
— The health service is one of the
biggest and most popular public services.
— Most people use the NHS as some stage
of their life.
— There is increasing organisation
amongst health service users seeking to influence both policy
and practice.
— It is a service dominated by professional
power and authority. Medical professionals are well organised
and very successful in securing sympathetic media attention.
— It is a highly diverse service, delivered
by a wide range of practitioners operating in different organisational
systems with different accountability arrangements.
— Advances in health technology are
raising ethical questions which require wide public debate.
— The NHS has responsibilities not
only to provide services to people who are ill, but also to contribute
to health improvement and the reduction of health inequalities.
PURPOSES
Different purposes for involving "the public"
in decision making need to be distinguished. These can include:
— To draw on the knowledge and insights
of people who have used services, and those who have experienced
living with illness or impairment, to improve the design and responsiveness
of services.
— To enable marginalised and excluded
communities to play an active part in defining health problems
and developing solutions to them.
— To prompt informed debate about health
services and health policy amongst citizens.
— To develop systems through which
public servants can give account and be questioned about their
plans and decisions.
Effective strategies for public participation
need to reflect these different purposes. The methods adopted
and the groups targeted for "participation" will likewise
vary. There are examples of methods of involvement intended to
address each of these purposes, eg
1. User representation in bodies commissioning
health services. For example, mental health service users in Nottingham
play an active part in service planning and have been involved
in contract specification.
2. Community development methods to engage
local people in defining health needs. In St Peters in Plymouth
Rapid Appraisal methods were used to identify local health needs.
Practical projects were subsequently developed which responded
to problem issues identified and involved local people in their
delivery.
3. Citizens' juries and citizen panels which
aim to inform citizens and develop capacity for deliberation,
as well as to inform policy making. Citizens' juries have been
held to promote informed debate on issues such as: the future
organisation of health and social care services (Belfast); policy
relating to mental health services (Kensington and Chelsea); preferred
models of palliative care (Walsall).
4. Local health strategy panels. As part
of their community involvement strategies a number of Health Action
Zones are setting up systems to ensure that priorities and plans
are influenced by local people and that they can also be involved
in monitoring and evaluating the effectiveness of strategies.
For example, Walsall HAZ is linking with local committees established
by the local authority and supported by SRB funding. They are
also developing Health Watch Groups, run by the Community Health
Council, whose remit includes monitoring local health care and
services.
POLICY CONTEXT
As in other areas of public policy, public participation
in health is seen as a means of delivering policy objectives:
including reducing social exclusion and creating more responsive,
higher quality services. Public participation within a health
context has to be seen in the context of significant change in
the organisation and governance of health services, and in the
context of the objective of achieving more effective partnership
working on cross-cutting policy issues.
Key aspects of this policy context are:
— The emphasis of primary care as a
location for both service deliver and commissioning, including
the establishment of Primary Care Groups and the pursuit of innovation
in service delivery as a result of the 1997 Primary Care Act.
There is evidence that it can be particularly difficult to develop
public participation within a primary care context.
— An emphasis on the public health
objectives of achieving improvements in the overall health of
the population and a reduction in health inequalities. This is
being pursued through HAZs, Health Improvement Programmes, Healthy
Living Centres. All require collaboration across agency boundaries
and the active participation of the public. They require joint
action in relation to involving the public as well as the co-ordination
of policies and services.
— Clinical governance—opening
up the practice of clinicians to scrutiny. There are examples
of user involvement in clinical audit, but also strong professional
resistance to lay input. The quality of clinical practice is a
matter of concern not only to direct users, but also to citizens
generally.
There have been significant developments in
public participation in the NHS during the last 10 years, but
there remains the need for the implementation of a coherent strategy—not
only throughout the service, but also in the context of emergent
governance arrangements which cross the boundaries of different
public services.
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