Researchers' experiences of patient & public involvement

Training needs for involvement

There has been growing attention to the training needs of patients and members of the public who get involved in research, but less so to the training needs of researchers. The NIHR INVOLVE website provides a useful set of briefing notes for researchers, and offers workshops for NIHR trainees at the annual trainees’ conference. In Wales, Involving People offers similar resources. Some face-to-face training courses are intended to be for both patients and researchers together (such as Macmillan Cancer Support’s ‘Building Research Partnerships’ courses) - see ‘Resources’. However, little formal training for researchers has been developed. Some universities and regional Research Design Services are now organising training, but this may be restricted to local staff, and researchers are not always aware what is on offer. Training needs are one of the issues raised in the NIHR’s strategic review on involvement, ‘Going the Extra Mile’. At the moment there is little consensus on how researchers’ training needs should be assessed, who should develop training courses, what the content needs to be, and how training will be funded and quality assured.

Many researchers we talked to had felt thrown in at the deep end to learn on the job (see also ‘Learning from experience of involving patients and public’).
There were mixed views about the need for training, and what the content would be if training were offered. Several people recommended it should form a part of all research and health professional training. Those who recommended training thought it could help with practical matters (such as how to recruit people for PPI, payment, how and where to set up meetings) but also more relational skills such as good chairing, communication skills and managing emotions and difficult conversations, and also the principles and purpose of PPI.
Some researchers had experience of training in mixed groups of patients and researchers and thought this was a helpful strategy for mutual understanding. Hayley noted that researchers might find involvement quite daunting; joint training with patients and the public could be one way to reduce their fears.
Catherine and Valerie both thought training would be useful, but wondered whether those who most need it would be the people least likely to attend. (See also ‘Colleagues’ attitudes to patient and public involvement ’).
The need for formal involvement training for individual researchers was questioned by some. Anne was sceptical about ‘formal guidance and training’ and said, ‘It’s just common sense, really, isn’t it? It’s about how you interact with people professionally.’ Alison felt it was more about ongoing support than specific training, and Sabi argued for the creation of a whole organisation culture or community of practice. A common theme was that, whilst some formal training might be useful, learning by talking to and observing colleagues and from one’s own hands-on experience was just as important, if not more so. This is explored further in ‘Learning from experience of involving patients and public’.
Training for patients and members of the public
The question of whether and how to train patients and members of the public for research involvement is explored in more detail from their perspective in our section on ‘Patient and public involvement in research’’ From a researcher’s perspective there were mixed views. There were concerns that training patients and the public could make them too close to the researchers, losing their fresh perspective (see also ‘Long term involvement and “professionalisation”’). There was also a sense that patients and family members already had the expertise they needed to contribute – their expertise by experience – so training in research methods was less important. At the same time, many researchers felt it was unfair to expect people to contribute without giving them some basic understanding about research methods and terminology, and the research environment, and maybe some training in how to communicate their perspective effectively. Some tasks such as serving on ethics committees or reviewing funding applications might require some specific learning.
There was some feeling that involving people who are not sufficiently trained might be damaging, both for the research and the individuals involved. Some researchers argued that there were limits as to the level of training it would be reasonable to expect, and that not everyone who became involved wanted an in-depth knowledge about research. While they could see an important role for involvement, ultimately researchers had to retain control over the quality and rigour of their research methods. The issue of researchers’ control over who gets involved is also considered in ‘Colleagues’ attitudes to patient and public involvement’ and ‘Finding people to involve in research’.
(See also ‘Long term involvement and “professionalisation”’ and ‘Doubts, worries and debates about involvement’).


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