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 sciencealchemy.’ 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.’
Roger A has had some training through a research network. The biggest difficulty is dealing with jargon.
People need to be trained because research is a specialist area.
Maggie went on a course in the US on cancer research and is now running a similar course in the UK. Learning from scientists has been amazing.
Derek runs training. People don’t need to know all the technical detail, but they need advice on how to do specific tasks, ask the right questions, and cope emotionally.
Roger B said the chair has a crucial role in ensuring peoples voices are heard, so it’s important that they’re trained to help people find the right time to tell their story.
Part of Catherines early training for involvement was about learning to take a wider view beyond your own experience.
Jennifer has sometimes cried in meetings about her mum’s experience, but in a way that has helped researchers understand the impact of dementia.
Marney went on a training course bringing lay people and researchers together but it was not very helpful.
Hazel is annoyed by so-called conferences where you are lectured at and don’t get a chance to learn through discussion.
Dave G strongly feels training is essential. He disagrees that being well trained means you become too professional.
Derek would like to see more online learning, but some things are best learnt by doing it, meeting people and asking questions.
You don’t need training for everything, but Kath thinks people should be given clear information about what’s expected of them.
Initial training is useful, but Richard thinks it should be ongoing, so you can work out what you need after some basic experience.
Lay people could design their own training. Andrew has always felt able to learn by asking questions, but would like more feedback about the value of his contribution.
Learning by asking questions in meetings is not easy, especially if taking part by phone. Hazel feels meetings are often not chaired well.
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.
Researchers don’t always know what they want from involvement, so it’s important for people to get this clear and ask for training.
Neil missed the training when he first started but has now been on several courses. The best was a joint workshop with researchers.
Researchers with little training or experience of involvement can be patronising in meetings. Younger researchers and social scientists seem more open to it.
Margaret helps run joint training for lay people and researchers. It helps researchers see how people can help rather than hinder research.
Kath has developed training for people who haven’t been to university like her. Researchers need to be more inventive about how to involve people.
Working on your own can be isolating, so Helen really enjoyed meeting others involved in a range of projects at a training event.
Andrew has always felt accepted by professionals, but it’s essential to have more than one person on a committee. They will leave if they feel isolated and threatened.
Opportunities for lay people to give each other support are really important, but it needs funding and organising. Social media may help.
Researchers have their own support networks already but users don’t. A buddy’ system can help prepare people for meetings.
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.