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Table 10 Participants’ Beliefs regarding Public Health Research

From: What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study

Priority Example quotes
Raising awareness of condition in schools and workplaces M- I think in school they need to be like more educated because at first the school just thought I was wagging it off but then I brought in the medical letters from the hospital and then still didn’t believe me. (England 16–24)
Raising awareness of invisible conditions F- I heard on the news a little while ago something about a disabled person with arthritis who couldn’t walk upstairs or something, wanted to use the disabled toilet. And they were told that they weren’t allowed because they didn’t look disabled enough. So I think they kind of need to raise awareness in that sort of thing. (England 11–15)
Developing patient databases/biobanks M- If you know, you are in a rural area with one local hospital and the doctor there has only heard of Lupus from a medical drama or something. It would be really helpful for them if they could go and get general statistics. What’s the general symptoms look like and how if this worked well or that worked well. So better communication between these large scale research projects given to more healthcare professionals you know could improve treatment. (England 16–24)
  1. F Female, M Male; Country focus group undertaken in; age group