This page explains why training those you involve is important and where to access training
The training consumers require will depend on the involvement activity and their experience. It is important to discuss any training needs with the consumers when you first meet them. Consumers who are involved in one-off sessions (e.g. surveys, interviews or discussion groups) may not need formal training or induction. Depending on the complexity of the topic to be discussed, basic information (e.g. to introduce the survey), may be sufficient.
Other options may include:
- sending pre-reading before the meeting containing information about clinical trials and other background information.
- making time at the first meeting to provide background information.
However, when consumers partner with researchers and research organisations on an ongoing basis, training is essential. This will ensure consumers have the skills and confidence to successfully participate in their involvement activities.
Evidence also suggests that consumer involvement is more likely to have a positive impact if consumers receive appropriate training and ongoing support.
- helps consumers understand where they fit in the wider research context such as within the research team or host organisation
- is a valuable non-financial incentive to involvement as it provides consumers with skills and confidence for the future as well as for an immediate project.
- helps to address the ‘power imbalance’, making involvement less daunting, particularly when consumers are asked to join trial groups.
The training consumer representatives receive will depend on the type of involvement and their level of skills or experience. Although the training you provide will depend on the involvement activity and the skills or experience of those you involve, people interviewed by Healthtalk.org identified some general topics that are useful to cover. These may include jargon, acronyms and abbreviations; statistics, different research methods and science awareness; the medical research process and terminology; research ethics and good clinical practice; how to review documents; how to contribute effectively in meetings.
Many organisations offer training in Australia including the Telethon Kids Institute, Consumer and Community Health Research Network, Cancer Council NSW and Cancer Australia.
You should also support consumer representatives in their role by taking the time to explain the general stages of your project, as well as providing (in plain language) more specific details of your research, such as the background to the project and where your funding comes from.
Training should meet the specific needs of those you involve. Therefore, it is important to ask consumers about their requirements. As consumers develop into their role or take on additional activities, you should provide them with the opportunity to discuss their role, including any further training and support needs. You should also view it as an opportunity to get their feedback on how you might support them better.
The Professional Consumer
There are concerns that once consumers have been trained or have been in the role for some time, they lose their ‘consumer perspective’ or can no longer reflect the views of the typical consumers.
However, it would be unfair to expect people to contribute without an adequate understanding of research. Research knowledge helps consumers to put their work into context so that they can be confident and effective in their role. Consumers who have accrued knowledge are likely to be well equipped for more challenging roles in the future.
- McKenzie, A et al. Consumer and Community Involvement in Health and Medical Research: Evaluation by Online Survey of Australian Training Workshops for researchers.(Survey). Research Involvement and Engagement1 (2016): 16. Web.
- Lockey, R et al. Training for service user involvement in health and social care research: a study of training provision and participants’ experiences (2004)
- Boote, J et al. Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis. Health Policy, (2006) 75, 280–297.
- Staley K. There is no paradox with PPI in research. J Med Ethics(2013);39:186–7. 10.1136/medethics-2012-100512