Patient and public involvement in research

Helena

Female
Age at interview: 43

Brief outline: Helena has a long-term health condition. She first became involved in research as a participant, then as a patient advisor. She went on to do a PhD in health research and became a user-researcher.

Background: Helena is a user-researcher. Ethnic background: White British.

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Helena has had a long-term condition since she was a teenager and has been involved as a patient participant, and later as an advisor, on many studies. However, she felt that the researchers often asked the questions based on incomplete knowledge and incorrect assumptions. She was certain she could bring something to research on her condition that healthy researchers were missing, so she successfully applied for funding to lead some research of her own. Her work was different to other research that was happening because ‘for some reason, no one is thinking of the things that seem to me to be blindingly obvious’. She feels passionate about involvement because she believes it makes research better.
 
Helena thinks involving patients in research is incredibly important and is always worth doing, especially when it comes to deciding what should be researched. She said it was similar to men doing research about women’s periods, and making assumptions about what it was like to have one, without asking any women. She said, ‘If your entire research team were men… and you’d not talked to any women about your research project, but it was entirely about women-only issues, people would look at you a bit odd I think nowadays. And yet that principle, that logic is not applied when it comes to PPI’.
 
Involving patients in research is about what Helena described as giving researchers ‘an insight from the other side of the fence’. She feels she can be useful to researchers because of her own personal experience. She said, ‘I know what it's like to be judged by doctors, continually managing a condition and continually on medication and continually relying on somebody signing prescriptions…Those things are useful and valuable … think about the expertise that you're bringing to the table’. She said there was no point in asking patients for the sake of it without thinking about their specific expertise: ‘ In the same way there's no point in me saying, "Oh I'm doing a research project, I'd better have some advice off a researcher," when I actually want someone who's got stats expertise. I need to ask someone with stats expertise’.
 
She thinks it is important to pay people who get involved, especially when they are being asked to do a job. She said, ‘If the patient is the only person round the room who’s not being paid, and they’re doing the same amount of work as the rest of you, there’s a problem’. She also thinks it’s unacceptable that there is a dilemma about paying people on benefits and would like to see the whole research community (including researchers, universities and funders) lobbying the government to change this.
 
Helena felt that researchers often misunderstand the point of involving patients and she thinks involvement will be improved if more researchers understand why they are doing it. Having more user-researchers will bridge the gap too. But she was worried about what the future would hold for involvement and feared that funding for it may be cut. As a message to other user-researchers, and all researchers, Helena said she would encourage them to be open and honest about their illness experience, and proud of what they’re bringing to the table. 

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