Patient and public involvement in research

Training and learning

We asked people to tell us about ‘factors which made it easier to get involved’. One of the most important was training for the role. Walking into a room full of research experts – who, as Hazel noted, may all know each other - can be intimidating. Andrew said professions can seem like ‘conspiracies against the laity’, and that their use of jargon tends to exclude others. Roger A said his first experience of neurology was like ‘mystical science…alchemy.’ Others pointed out this applies not just to medical research but also other types of health research. 

Training and learning opportunities may go some way to correct this ‘power imbalance’, as Kath put it. She also stressed the importance of researchers accurately costing in training when they are applying for funding. This may be funding people to go on formal training courses, as well as informal support and guidance. The type of training which will be most useful depends partly on the type of involvement, but people we talked to identified some general things it can be useful to have explained. These included jargon, acronyms and abbreviations; 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. Advice on how to prepare emotionally can also help. Kath said, ‘Some of these research projects have occasionally stuck sharp sticks into those wounds and, and it has been very upsetting sometimes. But that’s fine, that’s part of what I’m doing and I need to be able to deal with that.’
The question of whether to share personal experience and feelings in meetings was a point of disagreement. Some felt it was completely appropriate and was part of helping researchers see things through the patient’s eyes, and sometimes they just couldn’t help it. Others felt it was important to learn how to ‘leave the emotion associated with your own child's situation or your own condition outside the room’, as Catherine put it. Margaret’s group had had a training evening about when it was appropriate to share your own story, and decided it shouldn’t be every time because researchers ‘would have switched off because they would have heard it before.’ Roger B chairs meetings and agreed it wasn’t helpful for people to tell their story every time, but ‘you've got to allow them to tell their story at least once.
Although the amount and variety of training available to support involvement is much better than it used to be, some people had bad experiences of not being offered training, and in some cases the opportunities offered had not been very good quality. 
There is a dilemma around how much training is needed to contribute effectively. It sometimes felt to people as if they couldn’t win; either researchers said they couldn’t be involved because they didn’t know enough about research (which David Z said was ‘an easy excuse’) - or they couldn’t be involved because they knew too much about research and were therefore no longer able to bring a really lay perspective. Dave G felt the idea that he was a ‘professional patient’ was ‘an insult’. (See also ‘Long term involvement and expertise’) and thought more structured training with national standards was needed.
Although formal training can be really helpful (and enjoyable), what’s needed will depend on the individual and what they are being asked to do. People pointed out that there are some things you can’t teach, and some you can only learn through experience. Sometimes, as Richard suggested, it’s only after doing it for a while that you can work out what else you need to know. 
On the other hand, Hazel was still finding it difficult to learn ‘on the job’ because asking questions in meetings can be hard. Andrew suggested that more feedback from researchers about what difference you’d made could also be a good way of learning.
As people get more involved they may want different types of training. Richard would have found training in dealing with national committees useful; several people had gone on courses to learn how to chair meetings as lay people, and several suggested researchers could also benefit from this. 

The suggestion that researchers also need training in involvement was common. Brin said that researchers need to ‘look at the needs of the person that you're working with. Don't necessarily think that they know what they can do or how they can help you. It's the researcher's job to use their skill to enable the patient to provide the researcher with the optimum involvement experience.’ On the other hand, Derek suggested researchers often don’t really know themselves what they want from involvement, and like Kath (above) suggested it was important to have a clear discussion at the outset about what was expected. Written role descriptions are increasingly recommended, and NHS INVOLVE provides templates people can adapt for local use. Joint training for lay people and researchers was also suggested as a useful approach.
Several people talked about the need to take responsibility for some personal learning – to ‘do your homework’ and ‘be prepared to read around your research subject’ as Charles and Dave G put it. Francesco noted that researchers may want to work with people ‘who can hit the ground running’ but that this may make it difficult to involve a wider group of people. Kath and others suggested that rather than training people to meet researchers on their terms, researchers could be more creative about changing their own way of working. She had herself developed training for local people. 
Using the skills of people who already had experience of involvement to support others was widely welcomed. This might be through user-led training, but also through more informal support networks and mentoring, both face-to-face and through social media such as Twitter, Facebook and LinkedIn. Several people also recommended the support available through INVOLVE, though some felt it could do more as an organisation to encourage networking.
As well as support from other lay people, paid patient and public involvement co-ordinators were also a valuable source of support for many – though Jennifer felt ‘really disheartened’ when her local involvement manager seemed to feel she was getting involved in a project without her permission and took the project away from her. But Dave X thought the personal mentoring provided by his local involvement coordinator was excellent and described her as ‘an absolute mine of information.’ 

See also ‘Difficulties and barriers to involvement’, ‘Factors which make it easier to get involved’ and ‘Long term involvement and expertise’.

Our section on experiences of clinical trials provides information on what’s involved in the clinical trial process and the meaning of commonly used terms such as ‘randomisation’, ‘blinding’, ‘placebos’ and ‘controls’. This may be useful for people just starting to get involved.

Last reviewed July 2017.


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