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Time to Change Consumer Involvement in Nursing Research

doi: 10.1097/NCC.0b013e3181db512e
DEPARTMENT: Guest Editorial

The experiences of people affected by cancer are at the very heart of nursing research efforts. Because much of our work is focused on understanding how to improve experiences and outcomes for people with cancer, it is easy for us to believe that our research is inherently "person centered" and thus collaborative. Let's reflect on what truly collaborative approaches to cancer nursing research could be like, and how we measure up to such goals. Collaboration between people affected by cancer (consumers) and nurses in research is much more than providing a voice for individuals as participants in a research study. Today, research governing bodies in many countries require us to seek a different kind of consumer participation, where consumers and researchers work in partnership with one another to shape decisions about research priorities, policies, and practices.1 Most granting bodies now require explanations of how consumer and community participation will occur within a study. Ethical imperatives and the concept of patient advocacy also require that we give more considered attention to what is meant by consumer involvement.2 Consumers provide perspective on what will be relevant, acceptable, feasible, and sensitive research, having lived the experience of cancer. As a result, they offer practical insights that can ensure the successful conduct and better outcomes from research. Some granting bodies now even allocate a proportion of final score or assign a "public value" weighting for a grant, to recognize the importance of consumer involvement and reflect the quality of patient involvement in all stages of the research process.3

In practice, how do we develop effective collaboration with consumers in nursing research? Understanding priority research issues from a consumer's perspective is a starting point. Many cancer advocacy groups publish their own research priorities, and some professional groups invite consumers to contribute to identifying research priorities and research questions. The MacMillan Listening Study is one example from the Unite Kingdom of an extensive public consultation on research priorities. Key differences were observed in this study between professional and consumer research priorities; consumers prioritized research such as self-management and interpersonal interactions, whereas professionals prioritized biological effects of treatment and symptom management.2 Reviewing these types of priority listings can provide a rich source of ideas as well as justification for our research.

Consumers can also play an important role in research governance. They have for a long time been essential members of human research ethics committees and increasingly serve as members of grant review panels where they provide an important test of the significance of a study to patients and communities and of the adequacy of study procedures from the participant's perspective. Involvement in such roles can require major commitments on the part of consumers. Consumers may also face some barriers in relation to lack of confidence in their ability to judge research.3 As a result, some grant review bodies have developed consumer review criteria to determine what aspects of research are important to those affected by cancer and have established structured training programs to assist consumers to take on these roles.3

Although it is not yet common practice, consumers are sometimes included as an investigator on a study team. This level of involvement challenges traditional notions of what is meant by an appropriate "track record" to conduct research. Such involvement recognizes the important contribution that consumers can make to the scientific process and the advances that can be made by having multiple perspectives on the complex issues, which are typically the focus of nursing research.

Although nurses in many countries have come to appreciate the importance of more effective models of consumer-professional involvement in research, accountability for ensuring effective consumer participation is still lacking in the conduct of most research. We do not have good indicators for evaluating how well nursing research measures up with respect to effective collaboration with consumers. The time has come for us to reorient our thinking about consumer involvement and to develop more effective ways of realizing the benefits for people affected by cancer.

My best to you.

Patsy Yates, PhD, RN, FRCNA

Professor, Director of Research

School of Nursing and Midwifery

Queensland University of Technology

Brisbane, Queensland, Australia

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1. National Health and Medical Research Council (NHMRC). A Model Framework for Consumer and Community Participation in Health and Medical Research. Canberra, ACT, Australia: Commonwealth of Australia; 2004.
2. Wright D, Corner J, Hopkinson J, Foster C. The case for user involvement in research: the research priorities of patients. Breast Cancer Res. 2007;9(suppl 2):S3.
3. Saunders C, Crossing S, Girgis A, Butow, P, Penman A. Operationalising a model framework for consumer and community participation in health and medical research. Aust N Z Health Policy. 2007;4:13.
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