Overcoming the challenges to consumer involvement in cancer research

Abstract

Introduction  Within the last decade, there have been many government initiatives to promote consumer involvement in research, especially in cancer. At the same time, the number and influence of consumer groups themselves have expanded. However, the organizational infrastructure necessary to facilitate consumer involvement has not been developed. Consequently, consumer involvement has tended to remain essentially localized and project driven, with no strategic or regional lead.

Opportunities for involvement and identification of consumers  The opportunities for consumers to influence the research process at each stage of the research process are identified. The different types of consumer involvement are also examined. Novel ways of identifying and recruiting consumers that have been adopted by one cancer network are discussed.

The strategies used in one cancer network  An organizational model designed by one cancer network for involving consumers in research is illustrated. Three innovations are examined in detail. First, how three open consumer conferences have increased awareness of research among service users. Second, the recruitment of consumers to sit on project steering groups and a committee that provides a strategic overview of current research. Third, the establishment of a Consumer Panel for Research where reimbursed, trained consumers are able to provide a considered consumer perspective in a range of settings.

Conclusions  Cancer networks need to take the lead in the development of an organizational infrastructure to facilitate consumer involvement. The model developed in Sheffield could be generalizable to other diseases and other health‐care settings.

Introduction

Over the last two decades, there has been an expansion in both the number of cancer consumer groups and their profiles. However, cancer consumer groups are not homogeneous in their remit, philosophy or their desire to be involved with service providers in general and with research in particular. One study has shown that within a single UK health region there were large variations in both provider activity and among cancer consumer groups themselves in terms of geographical location, disease focus, group philosophy and numbers of users involved. ¹ Another study of the remit of cancer support groups found that only 11% were primarily concerned with influencing policy, with many groups arguing that providing advice and support was a higher priority for them. ²

Within the last 10 years, the importance of involving consumers in cancer research has been increasingly recognized by the government. Many national policy imperatives to drive consumer involvement forward have occurred in health‐care in general and in the field of cancer in particular. In 1991, the NHS Research and Development Programme was established with a mandate to prioritize research questions, co‐ordinate research and disseminate the evidence. In 1995, the ‘Calman–Hine’ Report was published and one of its most significant general principles was that ‘cancer services should be patient centred’ and incorporate ‘wider community perspectives’. ³ Another important development occurred in 1996 when the Standing Advisory Group on Consumer Involvement in the NHS Research and Development Programme was set up with a brief to ensure that consumer involvement underpins the ways that research is prioritized, commissioned, conducted and evaluated. This drive towards increased public participation was explicitly developed in the 1998 White Paper, The new NHS: modern, dependable ⁴ and a policy commitment to involve consumers was outlined in Research and development for a first class service: R and D funding in the new NHS. ⁵ Consumer empowerment was specifically identified as vital in the route to modernization in the NHS Plan, ⁶ while disease specific reports such as the NHS Cancer Plan, ⁷ also endorsed the importance of consumer involvement. Consultation with consumers also formed a significant part of the National Service Framework Assessments for Cancer Care. ⁸

However, the effectiveness of the call for greater consumer involvement in research is largely conditional upon a single factor – the relationship between the provider and the consumer. The strategy that most providers are currently adopting is of working with consumers who are members of existing groups. This means that the vast majority of consumers, who do not belong to groups, have no means of articulating their opinions. Although the issue of the representativeness of consumer groups may have been overplayed, ⁹ , ¹⁰ it remains a fact that only a minority of people join such groups. Furthermore, certain groups of people are intrinsically less likely to join support networks – people from ethnic minorities, those with advanced disease, the elderly and the frail, individuals with rare cancers and people living in rural areas where no groups exist or where access is difficult. ¹

Furthermore, despite the central initiatives there remains a lack of organizational infrastructure to foster and support consumer involvement with the result that it is frequently very difficult to integrate the ideals of policy with actual practice. The responses of providers to these calls for greater consumer involvement have essentially been at a local level without strategic overview or regional lead. This has meant that consumer involvement has consisted largely of one‐off, project‐driven initiatives, with little evidence of continuity, feedback or future planning. For example, in a review of consumer involvement in NHS Research and Development in Regional Offices it was found that:

Respondents tended to have little experience of consumer involvement … plans for future involvement were being developed independently … there still seemed to be little co‐ordination for communication of these plans between regions. ¹¹

Although there is some evidence that the number of local consultations is increasing, ¹² the quality of these is variable, with many involving consumer groups as an additional source of information rather than offering the consumer any real power to influence the research agenda. Indeed, it has been suggested that the NHS suffers from a ‘democratic deficit’ in general, ¹³ with the existing structures being unable to facilitate this kind of involvement. ¹⁴ Others have argued that the scientific community itself has set up its own barriers to consumer involvement – ‘obscurity has somehow set the tone for all levels of scientific work, thus making any sensible intervention by the citizenry virtually impossible.’ ¹⁵

Fostering consumer involvement, particularly in relation to cancer research, faces two principal challenges: developing the organizational support structures and reaching those consumers who have in the past been isolated or excluded. The following sections of this paper will show how one cancer network has responded to these issues.

The research process and opportunities for consumer involvement

There are a number of ways in which consumers are currently being encouraged to provide input into the research process. Building an ‘active partnership’ with consumers in the research process has been the focus of a number of recent NHS reports. ¹⁶ , ¹⁷ , ¹⁸ Consumer involvement in research has also been recognized as a key target in the Department of Health's Health Technology Assessment Programme. ¹⁹ Four main areas for involvement have been identified, including recruiting users to advisory panels, a mentoring scheme for new users, and inviting users to comment on research proposals and draft reports. The Cochrane Collaboration, a worldwide group that provides international stimulus for systematic reviews, has also begun to involve consumers in its work. ²⁰

Such involvement is considered important because it can assist in the identification and prioritization of issues, help avoid marginalization of vulnerable groups, develop realistic outcome measures, disseminate results to a wider audience and work to ensure that changes are implemented. Users may be involved at different levels and at different stages of the research process. For example, users may take control of a complete project, from design and data collection to dissemination. ¹⁷ , ¹⁸ Other methods involve collaboration, where there is ongoing input from users into the research, or consultation, where consumers’ views are identified but they do not share the power of decision‐making.

The various stages of the research process from identification of the research question to dissemination and publication have been extensively documented in many standard methodological texts. ²¹ , ²² , ²³ Successful consumer involvement need not mean that consumers have to be involved at every stage – some consumers, for example, may be very effective in assisting with dissemination of results. However, the most powerful way of involving consumers is to engage them at the beginning of the research process and then continue to maintain contact with consumers through the duration of the study. ²⁴ This is the approach that has been adopted in Sheffield and the North Trent Cancer Research Network (NTCRN).

Identification and recruitment of consumers

In many cases, consumer involvement in research is a one‐off, short‐term consultation. It is often a localized, discontinuous, isolating process that inevitably constrains the consumer's influence. It offers poor value to the provider and limited opportunity for the consumer. Obtaining input from consumers can be a problematic and time‐consuming process. Furthermore, issues such as recruitment, representativeness, expertise, training and continuity of input need to be addressed. For example, many people may feel unwilling to be involved if they are currently receiving treatment and they are unable to commit themselves to regular attendance at meetings. ²⁵ Researchers may not have the time, expertise or contacts to give these important factors their full attention. In the past, within Sheffield, an absence of a consultative mechanism to contact consumers has previously resulted in low numbers of respondents and a consequent tendency for the same individuals to be approached. The involvement of consumers was often on an ad hoc basis, with the result that the consumer's potential influence was often diluted.

A primary objective of our work with consumers is to maximize inclusion. Exclusion of the consumer voice can happen if the disease is rare, if sufferers are older or isolated, if the disease trajectory is short or if there are cultural constraints that prevent open discussion. ² Many initiatives tend to recruit their consumer representatives from existing support groups. However, only a small minority of people will ever attend a support group meeting. Furthermore, some support groups have their central focus as peer support and do not wish to become involved at other levels. Sole reliance on the membership of existing support groups can restrict the potential population with whom providers are able to construct a dialogue.

In order to maximize inclusion, a broad‐based approach to recruitment was adopted. This meant going beyond existing networks and trying to ‘reach the hard to reach’. Some of the options employed in this network include local radio and newspapers, posters and leaflets in clinics, GP surgeries, Citizens Advice Bureaux, law centres, libraries and supermarkets, utilizing Cancer Research Centre clinical trials databases to publicize initiatives, community centres and feedback reports sent to clinical trial participants. Specialist and research nurses working in local hospitals have suggested potential candidates for inclusion in initiatives. Clinicians have also approached patients and carers attending their clinics.

It is not an easy task to seek out and involve consumers in research. It can be harder still to avoid tokenism and develop an atmosphere and environment where mutually beneficial and harmonious collaboration can flourish. The NTCRN, working with the Sheffield Cancer Services Advisory Group (which is a subgroup of the Sheffield Cancer Centre), is strongly committed to furthering its consumer involvement strategy and ‘evidence of appropriate involvement in planning and delivery of research’ is now a performance indicator in its strategic plan. ²⁶ New initiatives, such as those described below, will enhance the ability of the network to deliver a research strategy that reflects the consumer's needs, and drive the current culture towards one of real integration and sincere empowerment.

How consumers can collaborate in setting and influencing the research agenda

Within the NTCRN, efforts have focused upon formalizing the process of consumer involvement and incorporating it into the organizational infrastructure. First, consumers are represented on the Supportive Care and Psycho‐oncology Research Group (SPORG). This subcommittee of the NTCRN was established in 2000. It provides a strategic overview as well as individual project review and support. Consumers have an equal say in deciding which research ideas should be developed and which should subsequently be funded. The presence of consumers on SPORG has resulted in a greater attention on outcomes and the question ‘will this improve the patient/carer experience?’ is one that we are now focusing upon more closely. Consumers themselves have identified research topics of particular interest to them and these have now been worked up into operational projects. The first study is an examination of the impact of providing breast cancer patients with information about clinical trials before their diagnosis, and the second is an exploration of whether difficult clinical consultations affect quality of care. In addition, consumers are also present on the recruitment panel that appoints new researchers, and on all of the current project steering committees to ensure the consumer perspective is maintained throughout each study's lifespan.

Secondly, a cornerstone in the Network's strategy has been the Consumer Involvement Conference or ‘Open Day’ held annually in Sheffield. Attendance at the Conference is free for all consumers and their travel expenses are reimbursed. Financial support has been gained by grants from the Joseph Rowntree Foundation, PPP Medical Foundation and Trent NHS Region. The conference is a forum for the voice of the consumer, with opportunity given to them not only to relate their own experiences but also to see where they fit within a wider framework.

In 2001, the Open Day concentrated exclusively on research and adopted a ‘consumer control’ approach. A conference steering committee was convened with the aim of promoting a bottom‐up, consumer‐driven approach to the design and development of research ideas. The committee comprised a 50/50 consumer/professional membership. Consumers took an active role in all aspects of planning the conference, from logistical considerations such as choice of venue, catering, programme format and promotional material design, to choosing who they wished to speak on the day, the conference themes and drafting a shortlist of workshop topics. From a list of topics generated by the conference planning committee, local support groups subsequently voted for the workshop topics they most wanted to attend on the day. Throughout this procedure, the role of the professional was one of support, advice, and providing the expertise and administrative support to enable the ideas of the consumer to be put into practice.

The Academic Palliative Medicine Unit of the University of Sheffield has provided the planning infrastructure for the conferences, from free access to rooms for planning meetings, to secretarial help and mailing facilities. At the 2001 conference, a large area was devoted entirely to the display of project posters promoting the range of research being carried out within the network. Normally, such posters had been designed for use at professional conferences; so poster presenters were given the opportunity to redesign their content and layout of their posters so that they could be more easily accessible to the layperson. They were also asked to stand by their posters so that conference delegates could discuss their work with them. Many of the posters promoted new or ongoing projects, and were ‘interactive’ in that delegates could ‘post up’ on adhesive labels their ideas, opinions or comments about particular studies. Some posters directly asked interested consumers to leave their contact details should they wish to take part in a project steering group. A sealed ‘deposit’ box for this purpose ensured confidentiality.

The conference speakers included professional academics, clinicians and researchers of international standing including specialists in communications skills training, genetics and pain management. Representatives of national cancer charities and senior NHS managers and administrators also participated in the conference. Each professional presentation was followed by a patient speaker who provided another perspective on the topic: equal time was given to both. In the afternoon session there were workshop sessions and a feedback forum. The workshops focused on research within three areas – in pain treatment, in complementary medicine and in information and communication.

The conference attracted 125 delegates and completed evaluation forms indicated an overwhelming positive endorsement, with the patient speakers voted as the most highly rated (88% of respondents rated them as excellent). Feedback on how well the conference planning committee worked suggested that, by and large, consumers were positive about their involvement. Most felt it was worthwhile and that their ideas were given full consideration. However, some were uncertain of how valuable their contributions were and felt that the committee would have benefited from more regular involvement and closer communication between members. Future conference committees will address these issues, and also consider how best to utilize the skills of the committee members themselves so that consumers can take on more responsibilities and key tasks. But overall, the question still remains the same, ‘How can we further empower the consumer and at the same time amplify their voice within the research community?’

The third, and most recent, stage in the development of the Network's initiatives aims to formalize the process of consumer involvement through a Consumer Research Panel. The panel is funded through ring‐fenced monies from the Network. Although local and national guidelines exist to pay consumers, ²⁷ , ²⁸ we are paying people at a higher rate of £7 per meeting or £50 per day, in addition to travel expenses. The panel consists of people who have experience of cancer, as patients or carers, and who are interested in research. A database has been compiled of their interests and abilities thus facilitating the most suitable channels for individual input and expression. Advice has been sought from other bodies, including Research Ethics Committees, which also seek to include the views and opinions of lay members, in order that appropriate Terms of Reference were developed. Members of the panel will be accessible to all researchers in the Network – to sit on committees, steering groups or to provide a considered consumer perspective.

Training is a key element in successful consumer involvement and enhancing an individual's capacity to participate. Lack of familiarity with structures, processes and terminology can be daunting. Members have taken part in a 2‐day introductory training session and a mentoring scheme has been established. Those attending evaluated the training programme itself very positively.

With the advent of the Consumer Research Panel, consumers in North Trent will have greater scope to influence the research agenda at all stages of the process and in more diverse ways. Consumers have taken part in Advisory Groups offering their advice on proposed studies. Groups have been set up for proposed projects investigating the use of thalidomide in cachexic patients and a study examining terminal rehydration. Consumers have presented papers at local, regional and national conferences. Consumers are assisting in analysis and dissemination and have contributed to publications.

Evaluation and future directions

The drive to expand the role and remit of consumers in research is an innovative development and configuring the most appropriate structures is itself a significant task. It is, therefore, important that initiatives should be independently evaluated in order that strengths can be highlighted, weaknesses recognized, and costs and benefits identified. A number of key markers for the evaluation of consumer involvement have already been identified. ²⁹ It has been suggested that initiatives should be broadly based and inclusive, in the sense that views from the ‘hard to reach’ and the vulnerable are incorporated. Inclusiveness should also be interpreted to mean that input from consumers should be sought at all stages of the research process. ³⁰ Consumer involvement should not be seen as a parallel development to the cancer networks but be fully integrated into structures at the national, regional and local levels in order to avoid tokenism and maximize the potential for consumers to exert their influence. Furthermore, consumers should feel confident that they are able to articulate their opinions independently and autonomously. In addition, it is important that consumers are not isolated and that there are linkages with other community and voluntary networks. Initiatives should also be properly resourced and supported. Finally, maintaining consumer involvement initiatives requires commitment and drive from key stakeholders.

In Sheffield, significant progress has been made in working towards developing a role for consumers to shape the research agenda and in meeting the quality markers identified above. Consumers do have the opportunity, through both representations on individual project steering groups and on SPORG, to influence research at all stages from formulating and developing the research question, to analysis and dissemination. Furthermore, the approaches made to recruit consumers to the Research Panel, for example, went beyond simply utilizing existing networks. All future research projects will be required to incorporate the involvement of consumers in the research design and ensure that appropriate funding is available to implement this.

For the NTCRN, consumer involvement is a performance indicator in its Network Plan, with consumers being represented on the NTCRN Project Board. The Consumer Research Panel itself is currently being independently evaluated by the Trent Institute for Health Services Research, using both quantitative and qualitative methods. Each panel member will be asked to fill in a short questionnaire every 3 months and a focus group will explore correlations between expectations and practice, training and support, and workload.

The structures that have been developed, while integrated into the overall Network, are user‐driven and consumers are encouraged to independently express their own views rather than reflect any policy directive. The provision of appropriate training is essential for developing the confidence of consumers to do this.

Ensuring that consumers are not isolated is important. There is close contact with the Sheffield Cancer Services Advisory Group as well as local and regional cancer consumer groups. The Network has a strong commitment to consumer involvement and has provided generous funding to support consumer involvement initiatives, such as the Consumer Research Panel. This has meant that consumers have been able to receive high‐quality training, be properly reimbursed for their input and receive appropriate support from a member of staff.

Finally, consumer involvement initiatives rely on the drive of key stakeholders to push the agenda forward. This is reflected by a genuine commitment throughout the Network to increase the input of consumers in its research activities. For example, a key figure in the NTCRN committed to consumer involvement was identified by the British Medical Association as one of the consultants leading change in this field. ³¹

Conclusion

The voices of consumers will tend to be weakened and their influence diluted as long as the nature of involvement remains on an ad hoc, single‐project basis. Although in the past this has enabled token representation, it has been at the expense of lack of co‐ordination and little or no connection to the NHS cancer service structure and strategic direction. ³² In addition, to give real power to consumers to influence the research agenda there should be opportunities for intervention at all stages of the research process. ²³ Furthermore, this vital input should be co‐ordinated, and here the Cancer Networks can play a vital role, particularly since the recent dissolution of Regional Health Authorities. The Department of Health is currently drawing together a costed implementation plan for Cancer Networks to start to get practical user involvement to inform service plans and delivery, and this may provide further guidance. ³² The development of an organizational infrastructure, led by the Cancer Network, dedicated to involving the majority of consumers who in the past have been isolated or excluded, is essential in helping to ensure the input of the consumer becomes a permanent and integral part of research culture. Furthermore, we consider that the model we have developed in Sheffield could also be implemented for other national service frameworks in other diseases and in other health‐care settings.