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.
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.
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.
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).
¨ 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 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.
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 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