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.
Researchers need to put resources in place to support more diverse involvement and think creatively where to find people. Adverts in the Big Issue and using social media might help.
Those already involved can help find new volunteers. Kath says we can find different ways to involve people who aren’t used to lots of reading and provide training.
Young people have busy lives but plenty would be willing. Stephen reaches lots of people through a blog and Facebook.
We need to work harder to raise awareness of public involvement and get a wide range of people involved in all research.
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.
Margaret advises researchers to make a start with any patients they come across.
Dave G advises researchers to select people carefully. Hed like to see a citizen researcher training course to create a pool of qualified people.
There should be open recruitment processes to involve a broad range of people – it’s dangerous to assume you have a representative view by involving one person.
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.
Catherine is used to applying for jobs with a CV, but she wonders if it might make it harder for some people to be considered fairly.
Peter says you need fresh perspectives but also experienced people who understand science and research. He has learnt this through being involved for 8 years.
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 cafe. 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.
Clinical researchers should involve their own patients. It’s harder for researchers who don’t have direct patient contact.
Sharon describes fun ways Cancer Research UK brings people together with researchers.
Science programmes on TV could help raise awareness. Anne suggests recruiting through University of the Third Age and the Women’s Institute.
Anne suggests recruiting through University of the Third Age and the Women’s Institute.