We asked people what factors made it easier for them to be involved, and what made it a better experience. Two important factors – payment of expenses, and training and support for the role – are discussed elsewhere. Here we look at other helpful factors, which are often about practicalities of involvement as well as personal relationships.
Practicalities included, for example, when and where meetings were held; different forms of communication; flexibility in accommodating people’s needs; recognising people have busy lives and other commitments; allowing people to dip in and out; providing help with arranging travel and making meetings accessible; being given plenty of time and explicit guidance on how to respond to documents; making sure meetings have plenty of breaks and refreshments; being clear what people are being offered as well as what’s expected of them.
Creative use of technology and social media to support involvement was welcomed, but the key message is to ask people what suits them rather than expecting everyone to get involved in the same way. What works for one person may be really difficult for someone else (see ‘Difficulties and Barriers to involvement‘). Similarly, finding the right task at the right time can help; Kath, for example, felt reviewing grant applications was a less emotional way to get involved when her son died, and after her stroke Marney said, ‘I didn’t take it on until I felt I could cope with it.’
Nadeem prefers to be sent documents in hard copy by post.
In the early days after his stroke, Neil found phone or email contact easier than face-to-face. It helps if researchers try to fit round peoples needs.
Marney likes to follow up face-to-face discussion with an email. This sometimes starts another conversation going.
It helps Sharon to have her travel and a hotel arranged. Social time together and face-to-face meetings make it easier to have teleconferences later on.
Kath first got involved through the hospice where her son died. Initially face-to-face involvement was hard. Reviewing grant applications was better because it was less emotional.
David Z has always felt his involvement has been highly valued and hes been listened to.
Equal partnership between researchers and patients makes both better than the sum of our parts.
A good chair (lay or professional) will encourage everyone to contribute but without pushing them.
The coordinator gave Margaret a list of common terms, and she has always felt able to ask any questions. Having a mentor can be useful.
At the first few meetings Andrew felt excluded by the jargon used, even though people were welcoming. It helped that he was not the only lay person.
Working on your own can be isolating, so Helen really enjoyed meeting others involved in a range of projects at a training event.
While people recognised that research can take a long time to produce answers, they often said it would be helpful to have some feedback on what they had contributed and to know more about how the research was going.
Helen says a bit of appreciation and feedback on what difference they have made is helpful.
Knowing you’ve been listened to and you’ve made a difference matters to Jennifer.
Last reviewed July 2017.