Upload
others
View
7
Download
0
Embed Size (px)
Citation preview
J Elwyn Williams
2 A LITERATURE REVIEW OF PUBLIC INVOLVEMENT
2.1 The Aim of a Literature Review
The critical review of literature is an important preliminary first step to the
understanding of what is meant by ‘public involvement’ and what has already been
done in this area. It is also necessary to understand how it has been researched and
to identify the current state of research in order to recognise the key issues. Hart
(1998) has identified some of the questions that a literature review can answer.
Hart p14 (1998)
This literature review will provide a perspective on how the subject has developed
and become established and comprehend the significance of work already carried
out in the field.
WP/JEW/LIT.2 1
What are the key sources? What are the key theories, concepts and ideas?
What are the major issues and debates about the topic?
What are the epistemological and ontological grounds
for the discipline?
What are the political standpoints?
What are the main questions and problems that havebeen addressed to date?
How is knowledge on the topic structured and organised?
What are the origins and definitions of the topic?
Literature search and review on your topic
How have approaches tothese questions increased our
understanding and knowledge?
The advent of modern electronically held data has meant that an extremely wide
search can be made of this topic area. A number of UK based search engines,
single search engines, multiple search engines, subject information gateways and
metacrawler searches, various journal searches and a book search (see appendix)
were used to obtain information about public involvement. In order to ensure the
search was comprehensive a variety of search terms, both under subject and
keyword search, were used using different formats. The information was assessed
according to the relevance of the material, with more emphasis placed on recent
examples of public involvement due to the rapid changes taking place in the NHS.
The authority of the author(s) was assessed by the inclusion of an authoritative
bibliography, the reputation of the journal or printer and the reputation of the
organisation involved. The content was assessed by its accuracy, objectivity,
methodology and the validity of the arguments used.
This has meant that a great deal of data has been obtained about public involvement
and the greatest problem has been putting some kind of order to the wealth of
information that was obtained from these searches and covering all relevant issues.
A systematic review was undertaken by establishing key issues and concepts in this
area.
2.2 What is meant by Public Involvement
The term ‘public involvement’ describes a range of activities concerned with
engaging people in various exercises with differing degrees of intensity, depth and
participation in the decision making process. Lupton et al (1998) suggest that the
concept of public involvement is rather ambiguous as it can be seen as both a means
to an end and an end in itself. They also identify two broad approaches to public
involvement: the democratic and the consumerist. The democratic approach
emphasises the need for public involvement in order to maintain a healthy
democracy and that the diversity of interests in society should be by having people
responsible in the political process. The consumerist approach, in contrast,
emphasises the importance of an organisation identifying the preferences of
individual consumers in order to enhance its market competitiveness.
WP/JEW/LIT.2 2
2.3 Reasons for Increasing Public Involvement
The 1970s saw an upsurge in interest in consumer participation which increased
during the 1980s. The NHS Management Enquiry (1983) identified the need for
the NHS to meet the needs of patients but questioned whether this was really
happening.
Public involvement in the NHS has been linked to consumerism and this was
particularly true during the 1980s and 1990s. It was probably stimulated by the
NHS Management Inquiry (Griffiths, 1983) which recommended that the NHS
should pay more attention to the experiences and perceptions of those who use the
services. However, Gaster & McIver (1996) concluded that there was difficulty in
the NHS becoming consumer-led. Often there is more than one consumer of
services and their needs may conflict. There may also be more than one provider of
service that need to work together, which may not happen. Concerns about
accountability were raised during the late 1980s and early 1990s as Strong and
Robinson (1990) demonstrated in their study of district health authorities. This was
coupled with the growth of consumerism which was strengthened by the
introduction of the internal market. Traditionally, within the NHS, doctors were
seen as the experts and therefore made the decisions on behalf of their patients. It
was assumed that they had the specialised knowledge and could act in the best
interest of their patients. A number of special interest and user groups emerged
who were successful in influencing services. General forces for change in public
service accountability with a more educated population and growing consumerism
have been credited with increasing interest in public involvement (Mullen &
Spurgeon, 2000). Even the medical profession have acknowledged the need for
public involvement (Royal College of Physicians, 1995) in establishing priorities in
health care. The general increase in involving consumers, customers, service users
and citizens by public service organisations was due to various initiatives such as
the Citizen’s Charters and the Code of Practice on Access to Government
Information (Seargent & Steele, 1998). The basic thrust seems to be that it
enhances legitimacy for priority setting decisions and possibly rationing decisions.
It is therefore centred around the notion of democracy in our society, the rights and
responsibilities of citizenship and the issue of democratic accountability.
WP/JEW/LIT.2 3
Looking outside the NHS, the Local Government Management Board (1997)
supports this notion as they suggest two groups of benefits for involving the public:
It can help improve services and make them more relevant and effective.
It helps promote the democratic process, with it being seen as a right that people
should have control over their own lives.
As a result services can be improved, eg to modify existing services in terms of
quality, timing and quantity. McIver (1993) makes the point that obtaining
feedback from services is an important part of the process of improving quality.
Generally it can be said that public involvement can improve decision making and
thus improve services. It can offer a new perspective on the services that are
provided and identify the needs and preferences of users. This means that it lends
authority to the decision-making process in a wide variety of contexts.
However, this does present problems as public involvement is a complex issue
(Lomas, 1997) due to the fact that people all have multiple roles and thus multiple
interests. Individuals are tax-payers, recipients of healthcare services and are
located in a particular area of the country. The views given by people in these
different roles could be in conflict.
Mullen & Spurgeon (2000) have summarised and set out very clearly the arguments
for involving the public:
As a publicly funded service, the NHS should be answerable to its actual and
potential consumers (Donovan & Coast, 1994).
In order to fulfil their role as ‘champion of the people’ health authorities must
demonstrate that they are capable of consulting widely and tackling difficult
resource allocation decision in a public arena (Heginbotham et al, 1993).
The public may have difference perceptions of issues from clinicians and it is
essential that the public voice is heard to avoid a unitary and potentially biased
professional view (Heginbotham et al, 1993).
WP/JEW/LIT.2 4
Appropriate and effective services are more likely to be developed if framed on the
basis of needs identified in conjunction with users (NHSE et al, 1998).
Greater public involvement in resource allocation decisions may lead to a widening
consensus about priorities (NHSE et al, 1998).
As the information relating to clinical effectiveness and outcomes grows, there is a
need both to inform patients and to ensure that the information itself reflects the
patients’ perspective on the benefits of their treatment (NHSE, 1996).
Mullen & Spurgeon p63 (2000)
2.4 Establishing the NHS and Developing Public Involvement
During the twentieth century the responsibility for the provision of health care was
increasingly taken over by the State. Various Acts placed a responsibility on Local
Authorities to develop environmental and some personal health services, with the
National Insurance Act recognising the State’s responsibility in relation to primary
health care. They had varying amounts of public involvement with democratic
accountability for services organised by Local Authorities. The Beveridge Report
on Social Insurance and Allied Services developed proposals for a National Health
Service. This led to the White Paper in 1944, which was widely consulted upon,
and the subsequent National Health Service Act in 1948. Many professions and
agencies fought hard for control of the NHS and according to Ham (1999) the
medical profession was successful in winning many concessions. The Local
Authorities and various voluntary agencies lost control (and less public
involvement) of their hospitals which were placed under a single system of
administration. However, some environmental and personal health services were
administered by Local Authorities, eg School Health Services, Ambulance Service.
Thus, it can be argued that there was a lack of real public involvement when the
NHS was established. Various executive councils, boards of governors, regional
hospital boards and hospital management committees were responsible directly to
the Minister of Health to allow for some kind of democratic accountability but little
public involvement.
Thus, the overall responsibility for the NHS was dependant on the convention of
ministerial responsibility to Parliament. However, the Secretary of State has
responsibility only for policy which is made at national level; with the
WP/JEW/LIT.2 5
implementation of these policies made at local level, where there was very little
public involvement at this local level.
Until 1974 a formal recognition of the importance of public involvement in the
NHS did not occur. The Community Health Councils (CHCs) were set up in
England and Wales by the Government to represent the consumer in line with the
then popular concept of community participation. Set up to represent the interests of
the consumer; they have a wide range of responsibilities and have developed in
different ways. Winkler (1987) stated:
“The problem of CHCs was that while as an ‘outside element’ they seemed a threat
to medical staff and poor administrators, too many of them sought security through
close association with senior management rather than challenging conventional
practices on the patient’s behalf. Some CHCs became, and remain, surrogate
health education departments; some are minor bureaucracies concerned with form
and procedures. A few developed into patients’ rights organisations and
specialised in the provision of hard information on services.”
Winkler (p2) (1987)
Others have also commented on the variety of roles for CHCs. For example, Jones
et al (1987) describes the primary functions of CHCs as those of providing
information to the public, dealing with complaints and providing information to
Health Authorities and Health Boards. The first two activities can be seen as
reactionary activities, whilst the latter leans more towards pro-activity in that CHCs
need to somehow, by some method, obtain information from the public to pass on
to those involved in health care planning.
According to Rubinstein (1991) however: “the Community Health Councils have
been in a state of confusion and anxiety about their future role, indeed some
wondered whether they had a future at all” (p5). The reason for this, Rubinstein
believes, is that around this time, direct public representation on Health Authorities
was being reduced with Local Authorities losing their representation and CHCs
“were hardly mentioned.” (p5). Thus the role and remit and importance of CHCs
in public involvement is rather varied.
WP/JEW/LIT.2 6
Previous Government reforms (Community Health Councils Regulations, 1985),
amended in 1990 when purchasers were established, emphasised the need for
purchasers to work closely with the CHCs in identifying health needs, developing
purchasing strategies and monitoring services. Purchasers and providers were
urged to involve CHCs in monitoring the ‘Patient's Charter’ from the patient
viewpoint and it was implicit that a representative of the CHCs should be invited to
Trust Board meetings. Trusts were also urged to ask CHCs for advice or support
when seeking patient’s views and to involve them in arrangements for monitoring
complaints.
The 1974 reorganisation also established the post of Health Service Commissioner
(Ombudsman) to investigate complaints against the Health Service. This was as a
result of concerns about the treatment of individual patients within the NHS. Their
role and remit was rather limited with its jurisdiction confined to non-clinical areas
(Ham & Heginbotham, 1998). Complaints are a useful way of obtaining feedback
about services and for obtaining the views of the public.
The Tory Government of 1979-1997 followed a policy towards what was then
called a consumer-led NHS (Secretary of State for Health, 1989a, Secretary of State
for Health 1909b, Department of Health 1991). However, as Harrison et al (1992)
pointed out, the removal of local authority representation from Health Authorities
meant that the general public did not have anyone to champion their needs. Health
Authorities were seen as being governed by a small group of managers and non-
executive members (nominated by Government), many of which came from a
business background. The Conservative Government developed an initiative call
‘Local Voices’ (Department of Health, 1992) which had an objective to increase the
involvement of local people in purchasing activities to give Health Authorities more
legitimacy. A number of ways were suggested: ie public meetings, contributions
from local voluntary groups, focus groups, health forums, rapid appraisal, telephone
hot-lines, surveys of public opinion, patient satisfaction surveys and complaints
procedures. The reasons given were to enhance the credibility of Health
Authorities and provide them with support for difficult decisions and ensure local
services were appropriate to local needs. The introduction of private sector
WP/JEW/LIT.2 7
principles into the public sector could give the public similar rights to customers of
private firms. This led to the Citizen’s Charter of the early 1990s designed to make
public services answerable to the wishes of their users (Prime Minister’s Office,
1991) and thus more accountable. It was linked to more individual choice and
strengthening of the democratic process. This could be done by giving people more
opportunity to participate directly in the policy-making process or through
strengthening representative channels. However, it is debatable whether these
measures increased public involvement in the NHS as there was a growing concern
(Cooper et al, 1995) among health experts and the general public that health service
reforms by the previous Government had left a democratic deficit with a need to
increase public involvement. This concern had been fed by issues such as rationing
and equity and increasing public expectation towards the NHS.
2.5 The New Agenda of the Labour Government
The Labour Government was elected in 1997, with a commitment in its manifesto
to rebuild the NHS. The Government documents ‘Putting Patients First’
(Secretary of State for Health, 1998) and ‘The New NHS : modern dependable’
(Secretary of State for Health, 1997) both emphasise more public involvement for
the NHS with a need to respond more to local need and being more responsive to its
users. This was in response to the growing criticism of the lack of accountability in
the NHS.
Both the White Papers for England and Wales talk about being responsive to local
needs and increasing local accountability, with decision-taking devolved as close to
patients as possible. This devolution though, should be matched by “mechanisms
for accountability and control” (Secretary of State for Health, 1997).
The public and patients are treated as equal stakeholders in all service issues
including the shaping and planning of services and monitoring of their
performance. Barker et al (1997) identifies the need for involving local people and
users in the development, implementation and monitoring standards and outcome
measures. In England this will allow PCGs to gain a better insight and
understanding of the needs of the population they serve.
WP/JEW/LIT.2 8
The development of Primary Care Groups (PCGs) in England and Local Health
Groups (LHGs) in Wales, whose roles vary from advising Health Authorities to
purchasing services, has increased public involvement. They all have lay members
(which should increase public involvement) and representatives of local voluntary
bodies on the boards. However, there are problems for them to be representative of
the public and present their views. Changes (Welsh Office, 1999) have developed a
new structure for CHCs in Wales, with a network of twenty-seven CHCs based on
area federations linked to local authority areas. Their focus was to be on Health
Authorities providing expert advice and public involvement at a strategic level.
There has been much debate in the rest of the UK on the future roles of CHCs. One
view suggested by the Institute for Health Services Management (Adams et al,
1998) was that they move from the ‘quasi-democratic’ role to professional
scrutinisers of public sector contributions to health; of the health impact of public
policies and of health services and facilities. Only a clear decision at Government
level can resolve the situation. The English White Paper (Secretary of State of
Health, 1997) has made board meetings open to the public and wants a strong
public voice in decision making, recognising the important part played by the
CHCs. However, attempts were made during 2001 to abolish CHCs in England
(but will be retained in Wales) but the Government dropped the abolition clauses to
ensure swift passage of the Health and Social Care Bill before Parliament rose for
the election (Health Service Journal, 2001). However, it seems that CHCs will
eventually be replaced in the new Parliament.
‘Improving Health in Wales’ (National Assembly, 2000) has increased the focus on
public involvement in Wales. It has committed the NHS in Wales “to developing
further the involvement and participation of the people of Wales in their National
Health Service” (p34). It also states that the involvement of people is central to the
direction in health and social policy. It does acknowledge that progress has been
made in improving patient and public involvement through the establishment of
Local Health Groups, Local Health Alliances etc. It also commits the Assembly to
ensuring a stronger public voice in the NHS in Wales. It remains to be seen
whether this will be achieved.
WP/JEW/LIT.2 9
Public involvement is being linked to other important areas in the present NHS
agenda such as clinical governance. NHS Trusts and other organisations are now
implementing clinical governance and this is being monitored by various
organisations. In Scotland a Clinical Governance Support (2001) network has been
set up to promote public confidence in the NHS in Scotland by setting, publishing
and monitoring evidence-based standards. The summary of the issues raised at the
meeting show that they have identified participation of the public as important; as is
the involvement of healthcare professionals with the expertise and ability to
implement and deliver standards.
Baker (2000) suggests that the reason for these policy shifts is that the Government
want to change the culture of the NHS and dilute the power of the medical
profession. He is also of the view that for the first time, due to the present reforms,
we will have true democracy in the NHS.
2.6 Methods used for Public Involvement
A whole range of methods of involving the public have been identified but
according to McIver (1998) there has been little comparative analysis and few
evaluations of these different methods with most research having been in the area of
user involvement and community care. The Research and Development Directorate
of the Department of Health (1995) confirms this lack of research and questions
whether public involvement in priority-setting have influenced purchasing plans.
The Local Government Management Board (1996) also state that little systematic
evaluation has been done of their services but take the view that positive benefits
had resulted from various public involvement exercises. McIver (1998) states that
evaluation of the different methods can be used to describe and identify the best
practice and which method is most appropriate; they should also examine the
impact of a particular initiative on those taking part. Clarke (2000) has identified
some examples of public involvement and attempted to evaluate effectiveness.
Nine criteria were identified for this evaluation which varied from being inclusive
and reaching all relevant groups to being innovative by using new methodologies.
WP/JEW/LIT.2 10
A number of publications have identified various methods Local Authorities have
(Local Government Management Board 1996, Stewart 1996 and Stewart 1997) of
obtaining informed views that range from deliberative opinion polls to citizens’
juries. In the past, the most common method used for public consultation in the
NHS was to send plans to CHCs for comment which is now seen to be ineffective.
However, Barker et al (1987) has identified a whole range of approaches which can
be used for public involvement including:
Public Meetings
Focus Groups
Meetings with carers and user groups
Targeting interested people
Semi-structured one-to-oneinterviews
Structured one-to-one interviews
Self-completed questionnaires
Open surgeries
Document dissemination to the public
Exhibitions
Seminars
Radio or live ‘phone-ins
The Press
Rapid appraisal
Participatory observation and ethnographic enquiry
Community development
Citizens’ Jurors
Citizens’ Panels
Health Panels
Large group processes
Handling complaints in the public arena
The Local Government Management Board (1996) have identified a range of methods
according to how far those consulted have an opportunity to input into the process and
influence the outcome.
WP/JEW/LIT.2 11
Types of Involvement by Scope for Input and Control
Local Government Management Board p1.6 (1996)
They give details of how to carry out these techniques with a range of examples
from across the UK that fit into these techniques but what was identified as crucial
is choosing the right method for consultation.
Seargeant & Steele (1998) identify choosing an appropriate method for consultation
as a crucial decision and identify three steps for covering the main decision in
selecting a method of consultation:
WP/JEW/LIT.2 12
KEY:X - axis = Extent of control/influenceY - axis = Scope for input (depth, breadth, open-closed, 2-way)
X
* Citizens’ Juries
* User Panels
* Planning for real
* Personal contacts
* Consensus searching
* Comments and complaints
* Committees
* Choice in service delivery
* Ballot box
* Focus groups
* IT mediated* In depth interviews
* Feedback from staff
* Requests for comments
* Meetings with representative groups
* Deliberative Opinion Polls
Little control
* Open days
* Exhibitions * Referendums
* Standing research panels
* Surveys
* Community profiling
Considerable scope
Little scope
* Mystery Shoppers
Considerable control
Y
Step 1: is to decide what the consultation is about - what is specifically driving it -
and to assess which method(s) will work best;
Step 2: involves checking that this method(s) is suited to the identified contexts
driving the consultation;
Step 3: involves checking that the method matches the consultees.
Seargeant & Steele p46 (1998)
The pros and cons of all the methods are assessed by Barker et al (1997) who also
stress the importance of evaluating the initiatives. A number of measures are
identified for evaluation with the main purpose being to indicate the level of
success achieved or to offer the opportunity to explore and record the reasons for
failure. There is also the recognition that the information gained from public
involvement is often not used to improve commissioning nor in improving services
for users. This is crucial to the public involvement process.
Mullen & Spurgeon (2000) have summarised the way that different methods
compare. Large scale surveys based on random sampling are said to offer the
greatest degree of representativeness but they point out the drawbacks of
simplifying what are complex issues. However, qualitative studies do allow for the
exploration of complex issues but have the problems of generalisability,
representativeness and legitimacy.
Rutt (1997) looked at rapid appraisal, focus groups and surveys in a research study
and found variations in outcome which could have been due to the method chosen.
This again seems to suggest that the method chosen to involve the public needs to
be assessed before any action is taken to implement the findings.
The citizens’ jury is one of the methods that has been developed in many countries,
primarily the USA and Germany, over the last twenty years. They follow the
pattern of identifying ten to twenty people, representative of the community, who
meet over several days. They are presented with verbal and written information
about an issue with the following discussion and deliberation facilitated by a
moderator. A report is produced which describes the deliberations and
recommendations of the jury.
WP/JEW/LIT.2 13
McIver (1998) undertook a review of citizens’ juries and came to a number of
conclusions. Citizens’ juries enabled local people to take part in the debate, receive
information and allow time for discussion and deliberation. They were then able to
make a number of recommendations to a health authority board meeting; thus, they
were able to have a positive influence on health policy. However, very few health
authorities have used this method as it removes power from the managers.
The main benefits were that the health authority was able to hear the views of a
broad cross-section of local people who could examine an issue without a vested
interest. These views were informed rather than uninformed or ‘off the cuff’
responses. However, drawback with citizens’ juries is the long lead-in time to plan
the jury being important. The cost is also a drawback which has to be set against
the lack of guidance from Government on the appropriate money that should be
allocated to public consultation. Another drawback is the small number that could
be involved and how they could be representative of the problem; this leaves the
possibility that the jury’s recommendations might not be approved by the majority
of the local population.
The NHS Primary Care Groups (1999) have developed a toolkit for public
involvement which explains why it must happen and how and when to do it
effectively. The toolkit identifies a number of methods for involving the public
which is then briefly described and assessed on its advantages and disadvantages.
They admit that skill in using the toolkit effectively is in judging which method to
use and when.
A number of GP practices have established patient participation groups across the
UK (McIver, 1993). The Royal College of General Practitioners supports the idea
and they are a useful way of improving the quality of the practice (Gillan &
Murrary, 1996). They also state that in the past, traditional methods have met with
limited success. Murray (1999) suggests that rapid appraisal has begun to make
important contributions in the assessment of local need and use across the UK.
WP/JEW/LIT.2 14
Dolan et al (1999) found that the public’s view about setting priorities in health
care are very different if they are given opportunities to discuss the issues. This
was following a study using focus groups and they concluded that surveys that do
not allow respondents time or opportunity for reflection may be of doubtful value.
What emerges from the literature is that no one right way of involving the public
exists with a result that a range of methods need to be utilised. The methods used
for public involvement must be matched to the purpose and the circumstances in
which it takes place. Due to Government policy, public involvement needs to be
built in to the NHS (and other organisations) and not seen as a ‘one-off’ and thus
requires a change in culture. Public involvement is no longer an option for those
who plan, manage and provide health services. In the future the agenda of
‘performance management’ will establish the extent to which public involvement is
happening.
2.7 Models of Public Involvement
Public involvement has been in existence for a number of years under various
guises. Various planners, policy-makers and others have a degree of dependency
on each other with terms like ‘consultation’, ‘collaboration’ and ‘participation’
having been used. All those involved have some opportunity to influence the
outcome of the process. These terms were used in the searches for information on
public involvement.
Ham (1980) describes consultation as an activity when a group’s views are actively
sought and may or may not be taken into account. In the past, consultation by
Health Authorities consisted of distributing copies of draft documentation to those
with an interest (usually CHCs) and inviting them to comment. Rothwell (1987)
described this consultation as being restricted to information sharing and did not
extend to participation in decision-making. He concluded that, as a consequence,
the value of consultation has become discredited in the NHS. It is something that
they are obliged to carry out but have little commitment to the process. Lee &
Mills (1982) stated that the professions, especially clinicians, expected their views
to be accepted by planners and policy-makers and thus they had little enthusiasm to
participate in the process of public involvement.
WP/JEW/LIT.2 15
The extent and type of consumer involvement in healthcare varies considerably and
Arnstein (1969) demonstrated this in a ‘ladder of participation’. This ranged from
manipulation through to consultation, with the highest level being citizen control:
8 Citizen control
7 Delegated power Degrees of citizen power
6 Partnership
5 Placation
4 Consultation Degrees of tokenism
3 Informing
2 Therapy
1 Manipulation Non-participation
Arnstein p217 (1969)
This basic model has been developed along the years (and is often cited by authors)
with Strong & Hedges (2000), for example, using it for involving users and carers
of the learning disabilities service. This model is simpler and easier to understand:
FULL CONTROL
4 SHARING POWER AND CONTROL
Shared decisions. Shared responsibility.Service users can have influence and determine outcomes.
3 PARTICIPATION Encouraging people to take part in their service. Service users can make suggestions and influence outcomes. Can be measured in terms of benefits of the individual.
2 CONSULTATION Asking people what they think of the service. Service users have limited influence. Can be measured in terms of the benefits of the organisation.
1 INFORMATION Telling people about the service. Service users have no influence.
NO CONTROLStrong & Hedges p8 (2000)
WP/JEW/LIT.2 16
Simpler models have been put forward with Pateman (1970) identifying and
describing three forms of participation: pseudo, partial and full. Pseudo is
described as a process in which no participation in decision-making actually takes
place with people persuaded to accept decision already made. Partial participation
is a situation where people have some influence over the final outcome but it is
partial because one party will have the final say in what happens. Full participation
is where each individual has equal power in the outcome of decisions with this
described as very rare in the NHS.
There are also different aspects of the NHS with Mullen & Spurgeon (2000) also
identifying a broad spectrum. They identify at one end how individual patients can
make personal decision about their own treatment and influence some services.
The other end is as a citizen able to influence and determine services which may be
made available to fellow citizens:
Ethos/values of health system(rights v rewards) (total expenditure on health)
What healthcare services/treatments should be provided(what is and is not included within the health service)
How and where health services are to be provided(locally v regionally)(institution v community)
Non-medical aspects(appointment systems, waiting, food, decor)
Individual choice of treatment(individual involvement, empowerment)
Mullen & Spurgeon p64 (2000)
It must be remembered that public involvement is an issue for other public bodies;
Local Government have a long history in public involvement and have developed
different models. The Local Government Management Board (1996) have
produced a guide where they identify three different but over-lapping ways of
involving the public and refer to Arnstein’s (1969) ‘ladder of participation’:
WP/JEW/LIT.2 17
Market Research - finding out about people, including what they think and want
through surveys, focus groups, etc;
Consultation - allowing for two-way communication, or dialogue, with the public;
Participation - providing for involvement in decision-making by the public.
Perhaps more than with consultation, participation allows the public to set the
agenda. By its nature, participation has to be a longer-term partnership.
Overview of Involving the Public
Local Government Management Board p1.1.1 (1997)
WP/JEW/LIT.2 18
Community Governanceand Partnership with
outside bodies
OFFICERSMEMBERS
Informing6
5
ElectoralProcess3.4
Agenda
Action Participation
3
2.2MarketResearch
2.1CollectInformation/Profile
Consultation2.3
RepresentativeGroups2.3.3
PUBLIC
Structure 2.4
Choice and Interactionat point of servicedelivery 3.3
Many of these authors suggest that organisations should in turn move up the ‘ladder
of participation’. The Local Government Management Board (1996) disagree with
the suggestion that organisations progress up the ladder and this need not be so and
that market research and participation can happen at the same time. They identify
different forms of influence and how barriers can be removed.
The Local Government Management Board (1996) also commissioned research on
Authority’s experience with consultation and found that most were taking place in
the area of ‘housing’ and least with ‘building control’. This was probably because
there is more scope for change with ‘housing’.
All these models are some kind of simplification of the whole process of public
involvement which demonstrate that there are different degrees of public
involvement in the NHS (and in other organisations). Identifying these different
levels allows us to understand the increasing demands from many sources for more
public involvement in the NHS and influencing services. However, it must be
noted that the higher rungs of the ladder of participation are not always preferable
to the lower ones. What is most important is that the right level is used for public
input into the process.
2.8 Response of NHS Agencies (and others) to the
Present Public Involvement Agenda
A number of the agencies in the health sector (and outside) are producing strategies,
statements, objectives, terms of reference etc on public involvement. One example
is the NHS Executive (1994) which produced examples of good practice which
were selected because they showed a range of activities currently taking place and
the innovation that they demonstrated. An important point about this document is
that both authority/population wide initiatives and client/locality specific projects
are given as well as the impact the public involvement has had on services. It also
shows the lessons learnt from the initiatives. Some are now obviously out of date,
eg involving fundholders could increase leverage with providers, but others are still
relevant. Many of the examples state that it is a time consuming process and that
once views have been sought they must be used constructively. The danger of
raising expectations is also highlighted and the way lobby groups can have real
WP/JEW/LIT.2 19
power over emotive subjects with the media. However, many of these examples
highlight the eagerness of people to participate in the process but trust and long
term relationships taking time to build.
The Department of Health (1999) issued a document setting out the action required
that the NHS Executive is taking to make public involvement central to its work. It
also identifies a number of initiatives being undertaken across the UK including
contact names for more information.
A Public Involvement Programme (2001) has been established and is run by the
Institute for Public Policy Research. It is a collaborative project for developing
new ways of involving the public in decision making. They also identify a number
of different models of public involvement and give examples of structures which
have taken place across the UK. One of their aims is to provide a clearing house
for the exchange of information, ideas and practical experience relating to new
models of public involvement. This was due to a number of organisations
expressing an interest in pooling knowledge and skills.
An example of public involvement that made a real difference to the provision of
services (Jones & Orchard, 1999), Avon Health Authority asked the local CHC to
organise public involvement in developing a new Health Centre. Six members of
the public were recruited on to an interviewing panel with the architects; local
views were also sought on how the building should look, with local residents and
Health Centre staff working with the architects as the design evolved.
Patients’ representatives have been employed for a number of years with a Patients’
Association established in 1963. Cartwright (1964) carried out a study of patient’s
views of hospital services in the 1960s and found problems with staff-patient
communication. Jones et al (1987) carried out a literature review of consumer
feedback in the NHS and found that this situation had not changed. The NHS
Management Executive funded a project under the management of NAHAT (1993)
to look at the role of the patients’ representatives in helping to develop services
which are less bureaucratic and friendlier to patients. They identified the problem
of turning data and views from patients into action but patients’ representatives can
WP/JEW/LIT.2 20
cut through bureaucracy to speed up the development of a more patient focused
service.
A National Patients’ Forum (2001) has been established and consulted widely to
determine the framework required at a national level to give a voice to the patients
and the public. A report was produced which urged the government to set up a
national body to make comments on the NHS and a wide range of health issues.
The body would be publicly funded with aims and terms of references already
identified.
The Scottish Executive (2001) have funded a two-year initiative which aims to
develop the level the public involvement in the planning, delivery and evaluation of
primary care. A discussion forum has been established to discuss issues, swap
information and provide comments on issues in primary care. In order to ensure
that people are not overawed by the process, three forums have been established: a
Beginner’s Place, a General Discussion and Local Health Councils.
North Wales Health Authority (2000) produced a strategy which represents a five-
year plan for involving the public and patients in the planning, delivery and
monitoring of health services in North Wales. A search of various web-sites
produced a wealth of material: the West Oxfordshire Primary Care Group (2001)
have established a public involvement group with the overall aim of the group
being to establish, develop and maintain methods of involving the public in order to
improve health and services in West Oxfordshire; Tayside Health Board (2001)
have undertaken an Acute Services Review and have identified that public
involvement requires three key elements: informing, involving and consulting.
They established a Patient Reference Forum to support the review process and
looked at three methods for engaging the public in decision making: focus groups,
deliberative conferences, citizen’s juries. Their strengths and weaknesses were
identified and the deliberative conference identified best met the objectives of the
review. To maximise public confidence in the independence of the process, an
external agency organised the process including producing a report upon the
findings.
WP/JEW/LIT.2 21
Anderson and Florin (2000) undertook a survey of all PCGs in London through two
self-completed questionnaires; one designed for Chief Executives and one for lay
members. They found that public involvement was a high priority for the majority
of PCGs but in a time of rapid organisational change there are many priorities. The
main obstacle they found to public involvement was a lack of time and resources
and the demands of more pressing concerns. PCGs did not leave public
involvement to their lay members but developed corporate approaches to public
involvement. They did identify the problem of a lay member sustaining
‘community voice’ but also found that they had a key role in advocating, enabling
and undertaking public involvement. They found that most of the public
involvement to date had been communication and consultation, rather than
participation and identified meagre financial investment. It was concluded that
more resources would be required to shift to more participation and community-
driven forms of involvement, along with a shift in organisational and professional
values.
Bond et al (2001) looked at public involvement in two primary care groups in Trent
region and identified a lack of training as a problem. They also found that the level
of public involvement was ‘information’ or ‘consultation’ rather than ‘participation’
and that a culture change was required if more effective public involvement was
developed.
As a result of an e-mail to all PCGs in England, a number of strategies were
forwarded as examples of what was happening in these organisations. There is
clear evidence that public involvement is on the agenda with a clear commitment to
an increase in this area. They are often linked to the Government’s agenda of
people having an input into decisions and in restoring public confidence in the
NHS. A number have taken their strategy forward by implementing some good
examples.
Oxford City PCG (2001) set up a citizen’s panel of one-thousand people who
agreed to give their views regularly on various health issues. They have conducted
a number of surveys on various issues such as housing and community issues,
WP/JEW/LIT.2 22
including health improvement and have obtained a great deal of information. They
conclude that it is a cost-effective form of consultation.
The Nene Valley Primary Care Group (2001) conducted a patient’s survey of local
GP services by contacting people registered with eight general practitioners. A
forty-two percent response rate was received, showing that patients were generally
satisfied with the services they received but showed some inconsistencies and areas
where services could be improved.
There are Doctor Vision Awards (2000) made for examples of good practice in
public involvement. Exeter PCG received an award for placing a strong emphasis
on hearing what local people had to say about health care services. They achieved
active public participation in policy decision with patient satisfaction surveyed and
fed back to every GP and Practice who all decided to take part in the survey.
Attempts have been made to standardise and establish good practice for public
involvement. The NHS Benchmarking Club (2001) have a number of members and
undertake a survey of what is happening in Health Authorities across the UK.
Minimum standards and good practice are identified each year.
Clarke (2000) identified a number of examples of public involvement drawing on
specific examples nominated for the Institute for Public Policy Research’s Public
Involvement Awards.
There appears to be a great deal of information already available to show how
services could be improved for people from ethnic minorities. McIver (1994) also
identified four priority areas where ethnic groups or services are concerned:
communication diet
information religious and cultural needs
McIver (1994) also identifies a range of methods that are available and how these
can be tailored to suit people from ethnic minorities. A number of studies have also
demonstrated that it is possible to obtain the views of people from ethnic minorities
WP/JEW/LIT.2 23
(Thorogo, 1989; Silvera, 1992). It therefore seems that in order to obtain the views
of people from ethnic minority groups, the questions must be relevant and it must
be possible to distinguish the responses from different ethnic groups; the methods
chosen must make it possible for these groups to respond.
2.9 Public Involvement from other parts of the world
Outside the UK the searches identified a number of public involvement initiatives
were identified. In 1996, the City of Vancouver committed itself to improving its
public involvement process, involving three phases. The first phase catalogued the
hundreds of ways the public is involved in decision making in Vancouver. The
second phase was evaluating those catalogued public involvement processes and the
third phase aimed at improving the city’s public involvement approaches and
strategies. A final report has been completed (City of Vancouver, 1998) which
identified that planning and mandating public involvement was the city’s greatest
weakness and providing feedback and evaluation once they are complete. It was
good at the actual mechanics of the process well and the number and variety of
techniques used. The attitude of some elected or appointed officials who, after
asking for the opinion of the pubic, then appeared to argue with it. This tended to
defeat the purpose of involving the public and damaged the credibility of the
process. Based on the above listed strengths and weaknesses, a number of
improvements were identified to improve the process.
Generally, in Canada, a number of provincial government reports advocate lay
participation in health care decisions. Charles & DeMaio (1993) stated the reason
being that patient preferences should be incorporated into decision making. They
also stated the desire to increase public accountability for decisions on the
allocation of health care resources so that providers are more accountable to the
communities they serve. They also identified the need to clearly identify how lay
participation can lead to better decision making.
In New Zealand there has been a determined attempt by the government to consult
with consumers and family/carers of consumers about mental health service
developments (Noseworthy, 1999); the main aim being to improve service
responsiveness to people who use the service. They identified that continuous
WP/JEW/LIT.2 24
quality improvement should aim for listening to clients/customers and that this
process must begin at the beginning with service planning, design and delivery.
The document also identified the implementation of the information as being
crucial. In New Zealand there is a Health Funding Authority (HFA) that purchases
health services in the country and this was used to translate family/consumer
involvement into action. The HFA would target funding so that the only services
purchased were those providing positive outcomes for consumers and family/carers.
They were concerned that a common complaint was that by the time consumer and
family advisers have been asked, decisions have already been made. They
identified that:
“Consumers and families can only meaningfully participate in service planning and
design where there is:
a change in service managers’ attitudes so that they routinely seek, respect and
implement the advice of service users and families/carers;
development and implementation of management policy which is explicit about
whole service interaction with consumer and family advisers;
empowerment and training of consumer and family advisers to enable them to
contribute positively;
support for the consumer and family networks that advise the advisers.”
(Noseworthy, 1999 p2)
In order to ensure that the extra consultation and participation makes a difference,
they suggested a ‘before and after’ market survey, with the primary question being
“has the change in service delivery resulted in a better quality of life for the person
with a mental illness and his/her family/carer.
In Australia, Guidelines for Consumer Involvement in the Co-ordinated Care Trials
(2000) provided a framework for the involvement of trial participants and their
carers in the trials. The main message from the consultation was to ensure that
consumer involvement commences early in trial development. They also found that
participants and their carers need opportunities to be involved with other consumers
WP/JEW/LIT.2 25
taking part in the trial as well as service providers. The Consultation Report (2000)
recommended the following aims to ensure that the expectations of consumers were
addressed:
“better health outcomes and improved quality of life;
participation, partnership and empowerment of consumers;
more effective use of resources”
Consultation Report, 2000, p3
Public involvement is recognised by the World Health Organisation as an important
concept. It is called by various names such as community involvement and has
been used to reform the traditional forms of top-down development practice
(Kahssay & Oakley, 1999) and given rise to more participatory development. This
stresses the importance of involving local people in the development of various
programmes and that it must be systematically developed on the basis of a clear
methodology. This contrasts very clearly with previous models which stressed
external delivery, physical or tangible improvements and the employment of
professionals to design and direct development programmes and projects.
2.10 Conclusions
There have been tensions in the NHS between different professionals, management,
the public, central and local control. Lupton et al (1998) concluded that during the
first thirty years of the NHS there was little evidence of public involvement with
the exception of the development of the CHCs and the complaints procedure. They
even argue that the CHCs were established to represent sectional interests rather
than to develop wider public involvement.
It must be remembered that there are a number of factors that influence NHS
Trusts, PCG, Health Authority, other than public or user views. Barker et al (1997)
identifies a host of other factors such as national priorities, finite budget, clinical
evidence on effectiveness etc. Thus, there are clear parameters to acting on public
views and these need to be established and made clear before any public
involvement is undertaken.
WP/JEW/LIT.2 26
In the past, attempts to bring the public into the planning process has received
mixed reviews. It was described by Checkoway (1981) as having an uncertain
future because rather than open up the process, it has concentrated power among a
selected view. Riddick et al (1984) noted that consumers were not able to assert a
controlling influence over the decision-making process. The criticism made in the
past is that public involvement is a false premise because no assurance is given that
any views proffered will be given any credence and taken into account (Lee &
Mills, 1982). They can be summarised as the NHS acknowledging that
consultation is important but the views of the professionals took precedence
because they were paid to manage the services. Rothwell (1982) concluded that
there was no evidence in the health service that the top rungs of the ladder of
participation had been, or are ever likely to be, achieved.
There is some evidence (Ham, 1980) that the inclusion of the public in planning
services does improve the quality of the product. There is evidence that (Entwhistle
et al, 1998) supports this view with the potential to improve the relevance and
impact of research and the quality of subsequent services. However, traditional
methods to encourage public involvement, such as public meetings, patient
participation groups and complaints procedures have met with limited success
(Gilliam & Murray, 1996). It has been argued (Murray, 1999) that the process only
asks about a restricted set of health services rather than asking people what they
think will improve their health. It was found that people were more competent to
discuss housing, work, stress, the local general practice and community nursing
services rather than prioritise more distant health services.
Public involvement is needed in a democratic society and decisions about
healthcare should also be part of a democratic process. It does assume that
meaningful or reliable data can be gathered about specific decisions and its purpose
must be very clear. What is clearly needed from the outcome is how the results of
public involvement might influence the decision-making. There can be conflict
between the views of the public and professionals and it has been used as an excuse
to avoid or undervalue public involvement (Flynn et al, 1996). There may be an
underlying fear that involving the public in decision-making can imply a loss of
power for professionals. Service change may also be driven by other agendas, eg
WP/JEW/LIT.2 27
central government, which do not address the needs of individual service users.
McIver (1993) makes the point that professionals should never assume that they
know what users consider to be important.
This shows that there are no easy ways of involving the public and Heinville &
Courtney (1979), after ten years of consultation exercises with the general public,
concluded that there was no easy solution:
“Measurements have to be tailored to the application to which they are put.
Questions must be as closely linked as possible to the way answers will be used.”
Hornville & Courtney, p175 (1979
Seargeant & Steel (1998) concluded that public involvement itself was unlikely to
transform public services. However, over a long period, the development of public
involvement will enhance the decision-making of an organisation and help change
its internal culture. They also identified problems where consultees disagree with
the conclusion that most methods will not iron out these differences. In these
circumstances decisions need to be made at a higher level, including the political
level.
The lack of a sustained drive to involve the public in the past is now being
challenged by the present Government’s new agenda. There are clearly both
advantages and disadvantages with increasing public involvement. Greater public
involvement does take much longer for a consensus to emerge at a cost in terms of
resources and time. However, it is possible to enable the public to prepare, with the
relevant professionals, plans and policies which would more closely reflect existing
‘needs’ and ‘demands’ for health care. McIver (1993) states that collecting the
views of users and ensuring that they influence decisions is not an easy option but
that public involvement will require more cultural and organisational change. Both
professionals and users need to be prepared for these changes through information
and training about the issues. Consumers of the services will need to feel that the
traditional culture of the NHS is changing towards a more participatory style in
which their views are respected. Professionals in the service will need to be
involved in training and development to encourage user involvement.
WP/JEW/LIT.2 28
Seargeant & Steele (1998) concluded that successful consultation requires specific
aims from the review of fourteen studies which they undertook. They identified
that a common weakness is for consultations to end without decisions and without
clear outcomes. However, once decisions have been made and the pattern of
outcomes prescribed, it must be communicated to all relevant audiences; otherwise
it may be possible for an effective decision and outcome process to have occurred
but a public perception that nothing has resulted from the consultation.
They also suggest that due to the growth of the voluntary sector involvement in
joint planning during the late 1970s and 1980s public involvement increased.
However, this was not universal as Wistow (1970) suggested that there was no
voluntary infrastructure in many areas of the country. Clarke (2000), in an example
of public involvement, did not have any from the top rung of the ladder. The
majority were viewed to be at the mid-point of the ladder - consultation. It remains
to be seen how the new agenda on public involvement backed by statements from
the present government will develop. Milewa & Harrison (2001) undertook a
survey of PCGs and PCTs outside London and found evidence of plans being
changed in response to public involvement; the most common being to find extra
resources for services. However, the concluded that it was not possible to say
whether they will have more success than Health Authorities in involving the public
in planning healthcare; it was not possible to separate good intention from solid
progress.
Barker (2000) suggests that increasing public involvement is unlikely to increase
public confidence in the NHS. The NHS will require a considerable increase in
investment to increase confidence.
In this study I am attempting to analyse what is happening in North Wales with
public involvement which has a number of key issues:
Awareness of key staff to any Government documents, policies and guidelines for
public involvement.
Examples occurring locally of public involvement.
WP/JEW/LIT.2 29
The difference methods of public involvement and views as to which ones have
been successful.
The reasons for increasing public involvement.
The future for public involvement.
Establishing present and future practice.
Once this information has been established in this baseline study it will be easier to
move forward with public involvement in North Wales.
WP/JEW/LIT.2 30
References
Adams (1998) In the Public Interest : Developing a strategy for public
participation in the NHS. NHS Executive, Institute for Health Service
Management. NHS Confederation.
Anderson W, Florin D (2000) Involving the Public - One of Many Priorities.
London : King’s Fund.
Arnstein S (1969) A ladder of citizen participation in the USA. Journal of the
American Institute of Planners. 35 ; 216 - 24.
Baker M (2001) Making Sense of the NHS White Papers. Oxon : Radcliffe Medical
Press.
Barker J, Bullen M, DeVille J (1997) Reference Manual for Public Involvement.
London : South Bank University.
Bond M, Irving L, Cooper C (2001) Public Involvement in Decision Making in
Primary Care Groups. Sheffield : School of Health and Related Research.
Cartwright A (1964) Human Relations and Hospital Care. London : Routledge
Kegan Paul.
Charles C, DeMaio S (1993) Lay Participation in Health Care Decision Making : A
conceptual framework - Journal of Health Politics, Policy and Law 18 p881-904.
Checkoway B (eds) (1981) Citizens and Health Care : Participation and Planning
for Social Change. New York. Pergannon.
City of Vancouver (1998) www.city.vancouver.bc.ca.
Clarke R (2000) Public & Patient Involvement in England, Scotland and Northern
Ireland : what works? London : Institute for Public Policy Research.
Clinical Governance Support Network (2001) www.show.scot.nhs.uk.
Community Health Councils Regulations (1985) SI 1985 No 304 as amended by the
Community Health Council (Amendment) Regulator 1990 (SI 1990 1375) and the
Community Health Councils (Access to Information) Act 1988.
Consumer Involvement in the Co-ordinated Care Trials (2000) www.chf.org.all.
Cooper C, Coote A, Davies A, Jackson C (1995) Voices of : Tackling the
Democratic Deficit in Health. London : Institute for Public Policy Research.
Department of Health (1991) The Patient’s Charter. London : The Stationery
Office.
Department of Health (1992) Local Voices : the views of local people in purchasing
for health. London : NHSME.
WP/JEW/LIT.2 31
Department of Health (1995) Consumers & Research in the NHS : An R & D
contribution to consumer involvement in the NHS. London : NHSE.
Department of Health (1999) Patient and public involvement in the new NHS.
London : Department of Health.
Dolan P, Cookson R, Ferguson B (1999) Effect of discussion and deliberation on
the public’s views of priority in health care : focus group study. BMJ; 318 : 916-
919.
Donovan J, Coast J (1994) Public preferences in priority setting : unresolved issues.
In M Malek (ed) Setting priorities in health care. Chichester : John Wiley.
Entwhistle V A, Renfrew M J, Yearley S, Forrester J, Lamont T (1998) Lay
perspectives : Advantages for health research. BMJ 1998 : 316 : pp 463-466.
Flynn R, Wilson G & Pickard S (1996) Markets and Networks : Contracting in
Community Health Services. London : Open University Press.
Gillam S, Murray S A (1996) Needs assessment in general practice. London :
Royal College of General Practitioners (RCGP Occasional Paper No 73).
Governing Guidelines for the Co-ordinated Care Trials (2000) available on the
Department of Health & Aged Care Internet site:
www.health.gov.an/hsdd/cocare/guides.htm.
Ham C (1980) Community Health Council participation in the NHS planning
system. Social Policy and Administration. Vol 14. No 3.
Ham C (1999) Health Policy in Britain. New York : Palgrave Publications.
Harrison S, Hunter D, Marnoch G, Pollett C (1992) Just Managing : Power and
Culture in the NHS. London : Macmillan.
Hart C (1998) Doing a Literature Review. London : Sage Publications.
Health Service Journal (2001) CHC axe to fall early in Labour second term p5 (24
May).
Heginbotham C (1993) Healthcare priority setting : a survey of doctors, managers
and general public. In : Rationing in Action. London : BMJ Publishing Group.
Hoinville G & Courtney G (1979) Measuring consumer priorities. In T O’Riordan
& RCD Arge (eds) progress in Resource Management & Environmental Planning.
Vol 1. Chichester : John Williams.
Jones L, Leneman L & Maclean U (1987) Consumer Feedback for the NHS. A
Literature Review. King Edwards Hospital Fund for London.
WP/JEW/LIT.2 32
Jones L, Lenerman L, Maclean U. Consumer Feedback for the NHS : A Literature
Review. London : King Edward’s Hospital Fund National Association of Health
Authorities and Trusts (1993) Investing in Patient’s Representatives. Birmingham :
NAHAT.
Jones T, Orchard K (1999) Centre of Attention. Health Service Journal. 12 August.
Vol 109 No 5667.
Kahssay H M, Oakley P (Eds) (1999) Community involvement in health
development : a review of the concept and practice. Geneva : World Health
Organisation.
Lee K, Mills A (1982) Policy - Making and Planning in the Health Sector.
London : Croomhelm.
Local Government Management Board (1996) Involving the Public. London :
Local Government Management Board.
Lupton C, Peckham S, Taylor P (1998) Managing Public Involvement in
Healthcare Purchasing. Buckingham, Open University Press.
McIver S (1993) Obtaining the Views of Users of Primary & Community Health
Care Services. London : King’s Fund.
McIver S (1994) Obtaining the views of black users of health services. London :
King’s Fund.
McIver S (1998) Healthy Debate? An independent evaluation of citizen’s juries in
health settings. London : King’s Fund :
Milewa T, Harrison S (2000) Group Dynamics. Health Service Journal; 19 April :
Vol 111 No 5650.
Mullen P, Spurgeon P (2000) Priority Setting and the Public. Oxon : Radcliffe
Medical Press.
Murray S A (1999) Experiences with ‘rapid appraisal’ in primary care - involving
the public in assessing health needs, orientating staff and educating medical
students. BMJ 1999 : 318 : pp 440-444.
National Assembly for Wales (2001) Improving Health in Wales : A plan for the
NHS with its partners. Cardiff : Stationery Office.
Nene Valley Primary Care Group (2001) http://www.nenevalleypcg.co.uk.
NHS Benchmarking Club (2001) Involving the Public :
http://www.nhsbenchmarking.nhs.uk.
WP/JEW/LIT.2 33
NHS Executive (1994) Involving People - Examples of good practice. NHS
Executive : Leeds.
NHS Primary Care Groups (1999) Public Engagement Toolkit.
NHSE (1996) Patient Partnership : Building a Collaborative Strategy. London :
NHSE.
NHSE. Institute of Health Service Management & NHS Confederation (1998) In
the Public Interest : Developing a Strategy for Public Participation in the NHS.
Cambridge : Bridge Consultancy.
North Wales Health Authority (2000) A Strategy for Public Involvement -
Partnership with Purpose. Mold.
Noseworthy S (1999) Consumer Representation in Health Service Delivery.
Enigma Publishing Ltd. www.enigma.co.nz.
Oxford City Primary Care Group (2001) http://www.oxfordcity-pcg.nhs.uk.
Pateman C (1970) Participation & Democratic Theory. Cambridge University
Press.
Prime Minister’s Office (1991) Citizen’s Charter : Raising the Standard. Cm 1399.
London : HMSO.
Public Involvement Programme (2001) www.pip.org.uk.
Riddick C C, Corders S, Eisde T, Montgomery A (1984) The Health Planning
Process : are consumers really in control? Health Policy Vol 4 pp 117-127.
Rothwell T (1987) Strategic Planning in the Health Sector. London : Croom Helm.
Royal College of Physicians (1995) Setting Priorities in the NHS. London : Royal
College of Physicians.
Rubenstein V (1991) The New CHCs. Patients Voice. Vol 51 pp5 - 6.
Rutt H M (1997) The public interest in decision-making. PhD Thesis. University
of Birmingham.
Seargeant J, Steele J (1998) Consulting the Public : Guidelines and Good Practice.
London : Policy Studies Institute.
Secretary of State for Health (1989a) Working for Patients. London : HMSO.
Secretary of State for Health (1989b) Caring for People. London : HMSO.
Secretary of State for Health (1997) The New NHS : modern, dependable.
CM3807. London : Stationery Office.
Secretary of State for Health (1998) NHS Wales : putting patients first. CM3841.
Cardiff : Stationery Office.
WP/JEW/LIT.2 34
Silvera M (1992) Public Accountability : Black & Minority Ethnic Communities.
Report of the First Stage of a Consultation Exercise with Voluntary Agencies &
Community Groups. Parkside Health Authority.
Stewart J (1996) Further Innovations in Democratic Practice. Birmingham :
University of Birmingham.
Stewart J (1997) More Innovations in Democratic Practice. Birmingham :
University of Birmingham.
Strong P, Robinson J (1990) The NHS under new management. Milton Keynes :
Open University Press.
Strong G, Hodges Y (2000) “Too many pages . . . .” SCOVOs guide to involving
service users to make services better. Cardiff : SCOVO.
Tayside Health Board (2001) www.show.scot.nhs.uk.
The Local Government Management Board (1996) Innovations in Public
Participation. London : LGMB.
The Patient’s Forum (2001) www.thepatientsforum.org.uk.
The Scottish Executive (2001) Public Involvement in Primary Care in Scotland.
www.designedtoinvolve.org.uk.
Thorogood N (1989) Afro-Caribbean women’s experience of the health service.
New Community; 15(3) : p319-334.
Vision (2000) Spreading Best Practice in Primary Care Organisations. Vision :
November.
West Oxfordshire Primary Care Group (2001) www.westoxon-pcg.nhs.uk.
Winkler F (1987) Consumerism in Health Care : beyond the supermarket model.
In Policy & Politics. Vol 15. No 1 pp1 - 8.
Wistow G (1990) Community Care Planning : A Review of Past Experience and
Future Imperatives. London : Department of Health.
WP/JEW/LIT.2 35
PUBLIC INVOLVEMENT - LITERATURE SEARCH
Search Engines Utilised
UK Based Search Engines AAA Matilda : England AltaVista UK Ask Jeeves UK Version Brit Index BritishInformation.com Cyberbritain Excite Search - U.K. Edition GOD Great British Pages Look Smart Lycos Mirago Mugomilk Official Site Register Questico : links to experts Search Thingy Search UK Snoopa Spark Search UK 250 : a quality selection of UK websites UK Click UK Directory UK Favourites.com UK Index UK Plus : British WWW Sites UK Searcher Ukmax WWLIB : classified listing of UK WWW pages Virgin Net: Google with extra listings for the UK Yahoo. UK and Ireland
Single Search Engines and Directories AltaVista BBC Webguide : directory Direct Hit DMOZ: open directory project : directory Exite Exite Precision Search Google : sites rated by popularity Hotbot Infoseek Librarians' Index to the Internet
WP/NW/SEARCH ENGINES 1
Magellan Northern Light Official Search : official or authorized web sites Power Search Qango Real Snap RDN: Resource Discovery Network Rex Riot Scrub the Web Search Europe Snap Topclick TotalSeek Trollus Webcrawler YAHOO : directory Yep ZenSearch
Multiple Search Engines 1blink 1click Ah-ha.com : All-In-One Search Page All the Web Ask Jeeves AskScott BetterBrain Chubba C4 Complete Planet : the complete source for search engines and databases Dogpile FooSearch Fossick Meta Search Engine Highway 61 Inference Find Internet Sleuth Ixquick Mamma MetaFind MetaCrawler Monstercrawler NationalDirectory Netcenter PopularSites ProFusion Proteus SavvySearch
WP/NW/SEARCH ENGINES 2
Search.com: Over 250 "search engines" from a single site The Search Page StartingPage Surfwax Verio Metasearch Yureka
Subject Information Gateways Academic Info World-Wide Web Virtual Library
Rational for Using Certain Websites
http://uk.altavista.com/ Alta Vista has access to 8 billion words in 16 million web pages. It also has an index of on-line periodicals and 13,000 news groups updated in real-time.http://uk.altavista.com/
http://www.alltheweb.com/ Fast Search covers more than 200 million URLs, and returns search results very quickly.http://www.alltheweb.com
http://www.go.com/ Go.com is a comprehensive search engine with good subject coverage, includes date of last site update.http://www.go.com/
http://www.google.com/ Google is a simple, uncluttered web search engine, with access to a huge amount of sites.http://www.google.com/
http://www.excite.co.uk/ Excite UK users can search for information resources (selecting from UK sites, Europe, or the whole Web), or browse subject categories such as Entertainment, news or technology.http://www.excite.co.uk/
http://www.hotbot.lycos.co.uk/ Hotbot is one of the largest subject-categorised search engines.
http://www.hotbot.lycos.co.uk/
http://www.lycos.co.uk/ Lycos UK is a popular subject-specific well-established search engine.http://www.lycos.co.uk/
http://www.northernlight.com/ http://www.northernlight.com/ Northern Light searches the Internet as well as providing abstracts to journals and other text-based resources, ordering results into subject-based folders.http://www.northernlight.com/
WP/NW/SEARCH ENGINES 3
http://www.ukdirectory.co.uk/ Ukdirectory aims to provide the most comprehensive guide to everything in the United Kingdom on the World Wide Web.http://www.ukdirectory.co.uk/
http://www.webtop.com/ http://www.webtop.com/ WebTop.com allows searching with keywords or phrases, and also allows restricting search to specific subject zones, search results include news as well as sites.http://www.webtop.com/
http://uk.yahoo.com/ Yahoo features a hierarchically organised subject tree. It presents results by subject category.http://uk.yahoo.com/
http://www.netmasters.co.uk/european_search_engines/ http://www.netmasters.co.uk/ european_search_engines/ GoTo.com provides links to European search engines, directories and lists, by country.http://www.netmasters.co.uk/european_search_engines/
http://www.searchengineguide.com/ http://www.searchengineguide.com/ Search Engine Guide provides access to over 3000 search engines portals and directories, search by keyword or through subject category headings.http://www.searchengineguide.com
Metacrawler Searches
Metacrawlers query a number of search engines at once. They avoid the need to search each search engine individually, so are very useful for research.
http://www.dogpile.com/ Dogpile sends a search to a customisable list of search engines, directories and speciality search sites as follow. The Web: Yahoo!, Thunderstone, Lycos' A2Z, GoTo.com, Mining Co., Excite Guide, What U Seek, Magellan, Lycos, WebCrawler, InfoSeek, Excite & AltaVista. Usenet: Reference, Dejanews, AltaVista and Dejanews' old Database. FTP: FAST FTP Search. Other NewsWires: Yahoo News Headlines, Excite News and Infoseek NewsWires.http://www.dogpile.com/
http://www.metacrawler.com/ MetaCrawler sends your queries to several Web search engines, including Lycos, Infoseek, WebCrawler, Excite, AltaVista, Thunderstone, TheMining Co., Looksmart, and Yahoo.http://www.metacrawler.com/http://www.mamma.com/ Mamma is a smart meta search engine. Mamma will analyse your query and properly format the words for each source it probes. Mamma will then organise the results into a uniform format, and present them by relevance and source.http://www.mamma.com
http://www.infospace.com/ Infospace white pages and yellow pages http://www.infospace.com/
WP/NW/SEARCH ENGINES 4
http://www.about.com/ About.com the human internet provides guides to more than 50,000 subjects with over 1 million links to the best resources on the Net each run by a professional guide.http://www.about.com/
http://www.askjeeves.com/ Ask Jeeves is a knowledge base which can be interrogated with plain English questions.http://www.askjeeves.com/
http://lii.org/ Librarians' Index to the Internet is a searchable, annotated subject directory of more than 7,700 Internet resources selected and evaluated by librarians.http://lii.org/
WP/NW/SEARCH ENGINES 5
About BookFind-Online
BookFind-Online is a subscription web service for library professionals and the book trade, designed to exceed the exacting requirements of those to whom access to the highest quality information in the most convenient form is a necessity.
The service: removes the need for networking bibliographic CDs; allows users to move from a monthly update cycle to a daily service; provides a reliable, convenient and comprehensive source of information about
English language books.
Premier Service
Global coverage with comprehensive information on UK and US titles as well as English language titles from Australia, New Zealand and South Africa.
Special ‘editions’ of the Premier Service are provided for users in Australia, New Zealand and South Africa which provide instant access for users in those territories to the information that is of most relevance to them, while still featuring the full range of information available.
Bookwise Service
Features
Draws on the richest and most comprehensive English language title database available.
All information is updated daily with the thousands of changes and additions to the Book Data database that take place every day.
Extremely powerful searching capabilities offer more than 40 criteria indexed and available for searching, as well as fast-track key word searches to search the whole database instantly.
Clear, uncluttered design and logically-formatted display layouts ensure both the fastest possible download times and ease of use.
The richest source of title information: long and short descriptions tables of contents cover images daily updated wholesaler stock information.
This was the package used to identify the books for this literature search.
WP/NW/SEARCH ENGINES 6