Patient and public involvement in research

Factors which make it easier to get involved

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.”
As Sharon suggests, getting to know people and building good relationships is another important factor. Many people talked about how much they enjoyed contact with researchers and feeling they were treated as equal partners – Dave X said his group had now started inviting researchers to open evenings with ‘wine and nibbles’ so they could get to know each other. It helped people to feel they were really listened to, valued and respected. When this doesn’t happen, people can feel very frustrated and excluded (see Difficulties and Barriers to involvement’). Helena gave a positive example of working in partnership, though recognising that her own status as a researcher makes this easier. 
Several people described the role of a good chair (whether a lay person or a professional) in making meetings feel safe and welcoming, explaining jargon, encouraging everyone to have a say, and creating an atmosphere of patience and acceptance. Alan and Margaret both commented that sometimes when they asked what seemed a ‘stupid question’ professionals round the table had said they hadn’t understood either and were relieved someone had asked. Chairs can speak to people before the meeting or offer them a chance to ask questions privately afterwards, and maintain informal contact between meetings. Where people sit during meetings with professionals may also be important to ensure the chair can see them and can bring them into the discussion. Good patient and public co-ordinators can also provide helpful support – these are paid staff who help organise and support involvement.
Margaret was not the only person to suggest having a mentor. Contact with other people involved in research was seen as a useful way to provide peer support and learn from those who have more experience of different kinds of involvement. 
Even if face-to-face meetings are not possible, Maggie explained how one group she is involved in has set up a Google Group to share ideas online.

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.
Finally, people said how important it was to see researchers and managers supporting patient and public involvement, both locally and at the highest national levels. This included visible leadership from bodies such as the National Institute for Health Research (including INVOLVE), the National Cancer Research Institute, various medical research charities and research networks.

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.


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