Many people commented on how impressed they were with the quality of the research staff they met. They felt they were in expert hands, but often also commented on how friendly and approachable the research staff seemed, and how willing they were to spend time answering questions.
Phillip takes the view that taking part in the research is almost part of a bargain with the researchers; by giving them what they need he hopes he will gain some benefits in terms of greater attention and involvement in his care.
Although Phillip is very pleased with the high quality of care he has had from the research team, he would like a closer relationship and more feedback about how the research is going.
Phillip’s curiosity about the research is partly because he is himself a professional scientist (although he has not done medical research). Frank, who like Phillip is from a professional research background, also said he’d like to know ‘where it’s going, what they’re doing. I suppose I’m so used to reading scientific papers, I’d probably like to pick up a paper and read what they’ve done with it, where they’d published it.’ Phillip also suggested the research team could hold some public lectures and perhaps set up a group where research participants could meet up and compare notes about their experiences.
Other were less worried whether they heard anything about the results of the research, and felt very satisfied with the research team.
John took part in an extra MRI scan as part of the research. (See also ‘Taking part in TIA research
‘). He was not entirely sure what they were trying to find out, but wasn’t too worried about that. He said, ‘I feel it’s up to me. If I wanted to find out more, I’m sure I could ring the researcher up and ask for further explanation. But because I don’t know enough about MRI technology I would feel that it wouldn’t be particularly fruitful.’