Are primary care groups and trusts doing the best they can to involve patients and the public in planning health services? Timothy Milewa and Stephen Harrison conducted a survey to find out

Primary care groups and trusts, like health authorities before them, are required by the government to involve the public and patients in the planning of local health services.

But is there anything about the nature of PCGs and PCTs, and the contexts in which they operate, that offers better opportunities to engage the public and patients?

As part of a study funded under the Department of Health's Health in Partnership initiative we conducted telephone interviews with chief executives, lay members and others in a random sample of 167 (40 per cent) PCGs and PCTs outside London in 2000 (see box 1).

Then we examined the impact of multi-agency partnerships on involvement through discussion with another 34 people drawn from the statutory and non-statutory sectors in three health authority districts in northern England.

There were 40 questions in the semi-structured telephone interviews. They covered activities and responsibilities for public and patient involvement, the populations targeted, inter-organisational working and perceptions of government interest in public and patient involvement. Over 85 per cent of groups reported some sustained consideration of public and patient involvement, and 45 per cent could cite written strategies or action plans. All but three of the PCG/Ts were able to describe specific involvement activities. A total of 519 were mentioned (see box 2).

Most initiatives - nearly 80 per cent - were aimed at local communities as a whole. But over 20 per cent were targeted at particular groups that included - in descending order of frequency - ethnic minority groups, deprived localities, elderly people and mentally ill people.

The two types of activities mentioned most often raised interesting issues of definition on the part of informants. Nearly 18 per cent of the activities seen to constitute involvement centred on visits by group members to voluntary, community or patient groups - a further 16 per cent encompassed the use of printed or electronic media (such as newsletters, websites or radio programmes).

Another 15 per cent of activities centred on more recognisable forms of involvement - user-oriented forums or locality groups concerned with issues related to healthcare. Other activities encompassed PCG/T representation on pre-existing networks in which the public and patients could express their views (11 per cent), questionnaire surveys (9 per cent), and stakeholder conferences (8 per cent).

Informants were also asked to identify involvement activities that had led PCG/Ts to change their policies or plans. About 30 per cent of informants could cite at least one specific example of change and 50 instances were identified. The largest proportion of changes (28 per cent) centred on the provision of additional resources, such as extra advice to teenagers on sexual health and contraception, an increase in the number of physiotherapy sessions and more care for people with back pain. Another 24 per cent of changes centred on the location of existing services - mainly general practices and pharmacies. Amendments to health improvement plans constituted 18 per cent of changes while procedural reforms, such as a decision to make more data on general practices (for example, prescription patterns) available to the public, accounted for 10 per cent of changes.

Partnerships and involvement The involvement activities and outcomes resembled those associated with earlier initiatives by HAs.

3But many informants also emphasised the importance of multi-agency partnerships as a means of community involvement. In order to gauge the influence of partnerships on community involvement, we used interviews and documentary analysis to inform longer-term case studies in three health authority districts. These data indicated that user and public involvement was the focus of multiagency committees in all three areas. It was clear though that these structures masked differences between the districts in terms of commitment and co-ordination with regard to public and patient involvement in PCG/Ts.

One district, reflecting the local authority's longstanding interest in community development principles, had been developing a multi-sectoral approach to community involvement for several years. This was reflected in the approach taken by the steering group of the local health action zone.

For two years the HAZ funded four community involvement workers. Each was attached to one of the four PCG/Ts but their contracts of employment were held by the local authority. The workers' role was thus to build the capacity of the new groups with regard to public and patient involvement, but also to pursue the commitment by the HAZ to a multi-sectoral approach to local involvement.

A second district also used HAZ funds to finance community involvement workers in local PCG/Ts.

A less marked tradition of multi-sectoral community development and involvement meant that the individual workers appeared to lack an over-arching common ethos with regard to public and patient involvement.

This was not, however, necessarily regarded as a disadvantage by informants; the district's size and topography fostered a series of natural communities, each with their own needs and ethos. Indeed, two of the five PCG/Ts were developing very close links with locality-based community involvement teams, established by the local authority in response to recent local government reforms.

There was a marked contrast in the attitude and approach of PCG/Ts in the third health district.

One local HAZ objective centred on the need to build community participation. This entailed the HA taking the lead in establishing a multiagency advisory group on public participation, of which representatives from local PCG/Ts formed a part.

But both the group and its initial strategy were soon in abeyance because, in the words of an HA informant, consultation by PCGs on future trust status had 'thrown structures for supporting community involvement up in the air'.

The community health council's project officer was more critical, arguing that such delay constituted 'a form of resistance' to public and patient involvement on the part of two PCGs.

In one respect the activities, nascent outcomes and obstacles (such as limited resources) faced by PCG/Ts in pursuit of public and patient involvement are redolent of those associated with HAs in the 1990s. But our research shows that, in some districts, considerable emphasis is now being placed on multi-sectoral strategies and mechanisms for community involvement.

The broader set of stakeholders - each to some extent accountable for developing community involvement - may be going some way towards combating a tick-box approach to the issue.

4Also, the fact that 30 per cent of those interviewed in the telephone survey could relate at least one change in policy or provision to involvement activities at a very early stage in the life of PCG/Ts suggests an encouraging awareness of outcomes, as well as processes, related to involvement.

But variations in the coherence of approaches to involvement in the three districts that we examined in more detail underline the continuing importance of policy champions - who will maintain community involvement's place on crowded agendas.

The key unanswered question at this stage is the extent to which the renewed emphasis on involvement will influence the attitudes and practices of those at the centre of the primary careled NHS, GPs and other primary care professionals.

The prospects for greater public and patient involvement appear quite promising, but it is still too early to separate good intentions from solid progress.


1 Department of Health. The New NHS: modern, dependable: developing primary care groups. Department of Health, 1998.

2 Department of Health. Patient and Public Involvement in the New NHS. Department of Health, 1999.

3 Donaldson L. The listening blank. HSJ, 1995; 105 (5471): 22-24.

4 Mort M, Harrison S, Dowswell T. Public Health Panels: influence at the margins? In Khan UA(ed) Participation Beyond the Ballot Box: European case studies in state-citizen political dialogue. UCL Press, 1999.