Measuring the impact of consumer engagement in research: a consumer perspective

JO COCKWILL, Consumer Advocate

JO OAKLEY, Consumer Coordinator, Gibbs Lab (personalised oncology division, WEHI)

The reasons why patients or carers become consumer advocates are numerous and varied. However, at some point in any conversation about motivation, consumers will invariably say they want to make a difference for others. Health consumers want to use their own life experience to contribute to higher quality health services and ultimately better health outcomes for patients. Passion and equality of opportunity are the basic premises for their motivation.

The reality for most health consumers is that they will generously give their time, energy and passion to a research project without really knowing what the impact of their involvement will mean long term or sometimes even in the immediate future. Measuring impact is very challenging for both researchers and consumers. It can be complex, time consuming, and it requires careful and informed pre and post planning. However, to continuously improve the quality of consumer participation it is important to build evidence of its value and to provide consumers with opportunities for personal and professional growth through meaningful feedback, based on co-designed impact measures.

There is now evidence that the consumer/ researcher partnership can play a significant part in fostering person-centred approaches to health care and more relevant medical research which is responsive to the needs of the community. Consumers want and need to know they are making a difference to both the engagement process and the planned project objectives of the project in which they are participants.

There are a variety of different approaches and tools to capture the experience and impact of involving consumers in health and medical research. Questions of why, how, when, and for whom research teams should attempt to capture this information, and, whether this information can be captured by a standardised tool at all, are important but not easy to answer. Dimensions such as scientific rigour, the consumer perspective, comprehensiveness, and usability are prioritised when considering the success of an evaluation tool1. Questionnaires and surveys are emerging as a favoured impact evaluation method and many different organisations have produced their own version. Tools such as these ranked most highly in a recent review of available tools by the Australian Health Research Alliance (AHRA), where tools were evaluated by both consumers and researchers. Additionally, there are cases to be made for short-form evaluation tools such as reporting checklists and for more in-depth reflective methods of evaluation that attempt to capture a holistic picture of the impact of consumer involvement on a research team and a research project. These include journal entries, interviews, and reflective writing. In the context of these existing tools, and the complexity of contemporary consumer involvement in medical research, evaluating its impact remains urgent, essential, and most challenging.

Whilst all these tools and many others, have merits and should be individually valued for their appropriateness for the task in hand, the importance of consumer involvement in the evaluation process is the vital component. The choice of tools and evaluation methodology needs to be planned within a consumer/researcher team to ensure relevance, compliance and accountability in the process. Conducting an evaluation in partnership also develops understanding amongst consumers of what impact measurement is and why it is important. Impact itself is a challenging concept. Unlike analysis of the research process or a study with pre-determined outcomes, impact measurement is less tangible and usually requires some value judgement. Consumers

Evaluation is a learning process both in its planning and implementation and can offer insights which influence future research or practice/ system change. Measurement of the impact of consumer engagement is important not only as a concept and for the learning it offers but also the meaningful partnership opportunities it creates. Though challenging, meaningful co-designed evaluation of the impact of consumer involvement in a research team can and should be done. Ultimately, such feedback will mean an increased sense of fulfillment for consumers and, therefore, an increased likelihood of continued engagement. Consumers need to know that their contributions are relevant and above all, that their involvement is integral to a research team focussed on improving health outcomes for all.