Patient and public involvement in research

Raising awareness of opportunities for involvement and finding new volunteers

Finding enough volunteers for patient and public involvement is a challenge, especially as the demand for volunteers grows, and the people we spoke to said they actively encouraged others to get involved. Many said raising awareness and using creative ways to reach people was vital, so it wasn’t just a matter of chance who found out about it. Most agreed it was good practice to advertise but not just in a few traditional places.


Although people felt it was essential to reach out to people from different backgrounds, they were concerned how to do this without being patronising. Helen said she could imagine people saying, “Don't treat us as special cases; we are part of your community.” Nadeem said, “Unfortunately somehow that message comes out as that I am only being asked because I'm different. I'm not asked because I will bring something more.”

There were mixed views about whether researchers not used to involving people should just plunge in and give it a go informally, or whether they needed to choose people carefully and have a more formal process. Having a paid patient and public involvement co-ordinator who can spend time supporting a database of interested volunteers can help. Andrew pointed out that it’s not just patients who may need training and support – researchers need help too.
Formal recruitment processes (in which people send in a written application and a CV, and maybe have an interview) are increasingly common. But people had mixed feelings about how to balance the need to encourage others to volunteer and make it easier to get involved with the need to make sure they are ‘right for the job’. Some felt people needed to be computer-literate and know something about science, but others said anyone should be able to do it, no matter what their background. Derek pointed out that he knew nothing about science and joked that his science teachers would be ‘turning in their graves’ if they knew he was involved in such scientific work.
Many different suggestions were made for good places to find people and ways to encourage them to come along. As Janice said, we need to ‘widen the net’. Maggie had talked to women at her swimming exercise group, and Richard recommended ‘sitting down with patients over a cup of tea in a café. Just ask two or three people there and run an idea past them and see what they say.’ 

Several people talked about using blogs and twitter, and some had used charity fund-raising activities to raise awareness of research at the same time. Reaching out to people where they are already rather than expecting them to come to you was a common theme. Charities, support group meetings, hospital clinics and waiting rooms were all mentioned, and of course people who are already taking part in research as a participant may be particularly interested.

We need more inventive ways to reach out to people where they are – in GP waiting rooms, or at the school gates.

Anne suggests recruiting through University of the Third Age and the Women’s Institute. See also: 
Representing a range of views and experiences: diversity
Representing a range of views and experiences: being representative
Difficulties and barriers to involvement
Factors which make it easier to get involved
Path to involvement– how did people find out about it?
Training and learning’ 
The costs of being involved and payment

Last reviewed July 2017.

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