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How cancer service users can influence research and practice

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VOL: 98, ISSUE: 33, PAGE NO: 32

John Hunt, RGN, is research nurse and Wilkes Fellow, Sheffield Palliative Care Studies Group;Tony Stevens, PhD, is research associate, Sheffield Palliative Care Studies Group;Nigel Mitchell, BSc, SRD, is senior lecturer, Sheffield Hallam University;David Wilde, MSc, is research associate, Sheffield Palliative Care Studies Group;Sam Ahmedzai, MB, ChB, BSc, FRCP, is professor of palliative medicine, Sheffield Palliative Care Studies Group

This article describes one cancer network's initiative to educate and inform patients, and in turn to absorb their patients' experiences and recommendations as services users into practice. It aims to stimulate nurses to consider how they might involve themselves in similar practical partnerships.

This article describes one cancer network's initiative to educate and inform patients, and in turn to absorb their patients' experiences and recommendations as services users into practice. It aims to stimulate nurses to consider how they might involve themselves in similar practical partnerships.

Patients as service users
Each country in the UK has developed a management plan for cancer services. The fundamental issue of involving service users is common to all.

The NHS Cancer Plan (Department of Health, 2000) states that the patient's experience of cancer care is variable: 'Some patients say they receive excellent care, with sensitive and thoughtful communication, clear information about their disease and its treatment, and good support when it is needed. Others report being given bad news in a deeply insensitive way, being left in the dark about their condition or badly informed about their treatment and care. Long waits and uncertainty add to their inevitable anxieties'.

To address this, the plan states that users and their carers should have choice, voice and control over what happens to them at each step in their care. It also says that cancer networks will be expected to take account of the views of patients and carers when planning services at a local level.

The movement to involve the users of cancer services in research and development is not simply policy driven. In recent years, consumer involvement in research has been implemented across the health care sector. The Department of Health's Consumers in NHS Research unit promotes an active partnership between consumers and researchers. Its publication Getting Involved in Research: A Guide For Consumers (Department of Health, 2001) offers examples of projects that have benefited from the involvement of service users and carers, and lists the types of research activities they have carried out (Box 1).

The role of nurses in supporting patients with cancer has often been as advocate for both patients and their carers. Because of their close contact with patients many nurses, whether they are ward-based or clinical specialists, understand the importance of ensuring that the care partnership is equally balanced. This can be achieved by helping patients and carers to understand the health care system and the options available to them. It also ensures that care is governed by the principles of best practice - particularly in the areas of information giving, communication and decision-making.

Service user representation will soon be at the heart of every NHS trust, with the development of independent patient forums and councils, and the replacement of community health councils with patient advocacy and liaison services (PALS). Although these new bodies will give users greater influence over health services, changes in policies, procedures and guidelines often evolve as a result of research evidence. It is therefore important to ensure that service users have the opportunity to influence research priorities as their experiences may suggest research topics that professionals may not identify.

Open day
A cancer research open day was arranged in Sheffield in November last year to allow service users and professionals to present and discuss their experiences. The open day's agenda was set by service users, who represented 52% of delegates, and was the result of earlier meetings of representative groups in North Trent. The aim was to ensure that users were involved in and could influence the development of services, practice and research.

One of the features of the speakers' agenda at the open day was that it reflected many areas that were also of concern to members of cancer multidisciplinary teams and researchers in the field. Users wanted to hear about developments in communication skills, the management of pain, information services, advances in cancer research and complementary therapy treatments.

The open day also gave professionals an opportunity to seek users' views on the services they receive. This was particularly useful as it was outside the arena of clinical practice, where users may feel less able to express their views.

A range of professionals presented formal talks on the following topics:

- Better research with consumer involvement;

- Coordinating information services: can we get a better deal for consumers?

- What has research taught us about information/communication needs?

- What is new in pain relief?

Delegates were also able to attend three workshop sessions. They were:

- Information and communication issues;

- Identifying research priorities in complementary therapies in cancer care;

- Treatment for cancer and its efficacy.

The day also included poster displays on a range of research initiatives on cancer, supportive care and palliative care. While poster displays are a common feature of professional meetings, they were new to many service users.

Users' 'ownership' of the event was given greater weight by the inclusion of three speakers who had used cancer services for a long time. Their comments summed up the reality of the patient's journey. Their ability to articulate the highs and lows of their progress through therapies, their relationships with professional carers, and their reflections on services and policy were all extremely relevant to the debates in the second part of the day.

The views of service users that emerged from the workshop discussions were consistent with anecdotal evidence from practice, and with the research and policy agenda (Box 2).

Although this form of user involvement offers many benefits, it is vital to remember that it is just one of many options available to elicit patients' information needs and desire for involvement in decision-making.

The open-day format gives professionals an opportunity to meet service users on equal terms, whereas there is often an imbalance of power in the clinical situation. The workshop sessions enable debate on what changes are required to develop a more responsive and effective service. In this instance the outcomes related to the research agenda and enabled researchers to engage with users on past and current research. However, open days could also be used to focus on other priorities.

Implications for practice
Open days have great potential to increase user involvement and create links between service users and providers in a range of areas. They need not be cancer-specific - nurses from other specialties may see this framework as an opportunity to engage with their patients, researchers and clinicians, particularly where there are issues that require research to stimulate and inform change in the way services are delivered.

These events also present an opportunity to invite groups or individuals who might otherwise not be involved in exchanging information with professionals into the research debate. They can therefore begin a trickle-down effect, whereby patients or local support groups become involved, gain knowledge and confidence, and are enabled to participate in equal partnership with professionals. There are suggestions that consumer panels for research should be established, in which trained, paid consumers are able to provide a considered perspective on a range of settings.

Nurses, together with other members of the multidisciplinary team, can support, advise and bring their caring expertise to open days, enabling consumers' ideas to be put into practice.

One extremely positive outcome of the cancer research open day was the recruitment of potential members for a local consumer research panel. The poster displays, which invited service users to comment or sign up for involvement in research projects, were also extremely successful, and one particular project recruited several participants.

There were, however, some unanticipated difficulties. Comments from some users suggested that it was a long day for people whose general health was not good. Also, the workshop format was designed to enable participants to work through a series of questions related to consumer issues, which would then lead to the development of a research agenda. This did not work as well as we had hoped because the discussions in each group were intense and wide-ranging. In addition, some workshop facilitators had their own thoughts about the prompt questions, which led to focused debate.

Despite these difficulties, the themes emerging from the discussions show that many long-standing issues continue to affect cancer services. Our new research agenda will concentrate on addressing these issues.

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