Researchers' experiences of patient & public involvement

Chris

Male
Age at interview: 48

Brief outline: Chris conducts research in childhood disability. He began involving parents of disabled children in his research approximately five years ago.

Background: Chris is a Health Services Researcher. Ethnic background: White British.

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Chris initially trained and worked as an orthotist, making equipment for physically disabled people. He then moved into academic research, which was largely informed by the conversations he had with patients in clinic waiting for their plaster of Paris casts to set. He later took up an academic post at a university that strongly encourages involvement at a level that Chris hadn’t fully comprehended until he started the job. It took about a year for him to understand what involvement was about, and what impacts it would have on research, on the people he involved and on him. He achieved this by ‘learning on the job’, trialling things and finding out what worked well and also what didn’t, a process which could have been more difficult without supportive colleagues.  

Chris runs a childhood disability group that has an involvement panel called the Family Faculty. It comprises a few hundred parents who are contacted through an electronic mailing list and a smaller group of parents who usually attend face-to-face meetings. Parents can get as involved as they like; Chris and his team recognise that due to their children’s health issues, parents might dip in and out. The families are involved in all aspects of their work, and there are challenges associated with this, but Chris said these can be overcome.  

The Family Faculty meetings usually take place at the university because there’s no charge for the venue and parking is free. Lunch is provided, which Chris was an important opportunity for peer support and to have a chat with each other. If people can’t attend the meetings, they can be involved by phone. People are offered payment to acknowledge the work they do. Chris thinks this is fair as they are providing expertise that the researchers otherwise wouldn’t have. 

Recently the group secured funding to employ a family involvement coordinator, who liaises with the Family Faculty. Chris described this is a crucial role and a ‘bridge between the boffins and the families’. The group is beginning to involve children and young people in research and the coordinator has been working to do this in local schools, developing relationships, which Chris said is important for involvement. 

Chris described involvement as ‘constructive cooperation...feeling you’re on the same team and that you’re stronger together’. It makes research more relevant to families and more likely to make a difference to their lives. Research is a slow process and it can take years before it is funded or improves people’s lives, so for Chris an important part of involving people is managing their expectations. He said he benefits from it because it makes his research more fun, but it also has the added advantage of improving the self-confidence of parents who often have had a difficult time since their children were born. 

Chris has been on a journey towards understanding how involvement makes a difference to research and this has taken him some time. He said we need more evidence about what leads to a greater impact and an important part of that is to reflect on the impact of involvement as the study progresses.

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