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Difficulties and barriers to involvement
There are many reasons why people may find it difficult or challenging to get involved in health research. These may include personal difficulties (physical and/or...
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.’
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.
See also:
‘Difficulties and barriers to involvement‘
‘Training and learning‘
‘The costs of being involved and payment‘
‘What activities and tasks are involved?‘
Last reviewed July 2017.
There are many reasons why people may find it difficult or challenging to get involved in health research. These may include personal difficulties (physical and/or...
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