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Table 2 Focus group analysis themes (Stage 1)

From: Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities




Illustrating citation

Determinants of PPI in numerical aspects of research

Relationship with researcher and research environment

Quality of interaction with research, including empathy and trust that facilitates and motivates patient and public partners

It’s doing it in such a way that you’re not devaluing the other person; you’re not making them feel as though they are stupid, and you really want to engage with them and understand their perspective, and that’s people skills.” [P2, FG1]

Patient and public partners confidence

Being able to question researchers and their assumptions

But I’d like to learn a bit more, so I could ask questions and start to be more effective in this kind of setting where there’s a whole bunch of things I don’t know about, as well as the numerical stuff. But I sense that the clinicians aren’t that confident either and they just get in a statistician as soon as they get to the numbers bit.” [P3, FG2]

Communication of numerical aspects

The use of jargon and the inaccessibility of definitions and resources to help patient and public partners participate in number related discussions

“... You need wordsmiths. And there are very good technical writers who can write plain language, ... … You want the kind of science journalist that you see writing on the BBC website. Or contributing to radio and television programmes. You want someone that’s got a bit of scientific knowledge, you want someone that’s got some understanding of medical world...” [P1, FG2]

General perceptions of statistics and numbers

Observations about general public’s perceptions of statistics and numbers as a potential determinant of interest and understanding of research’s numerical aspects

“… That’s quite scary when education’s so poor. Well it’s not the education that’s so poor, it’s the emphasis I think perhaps on numbers, there’s an awful lot of people very scared of numbers.” [P2, FG1]

Identity and role

Patient and public partner’s role

What patient and public partners believe their role should be in relation to numerical aspects; their interest in helping define the context and assumptions behind deriving a number, as well as its interpretation

Yeah, it’s our job to decide what numbers you’re going to look for and then decide whether you’ve found the right numbers from our perspective and pass on that information.” [P5, FG1]

Patient and public partner’s characteristics

How motivation and personal experience can lead to more interest in being involved in numerical aspects of research; reflection on what that means for involvement in these aspects

For me the problem lies in when you ask these people to put a number, what influences them to reach the number five? There are the variables again you know, you’ve got your people who are poor, your people who are rich, your people who have false teeth and just put, “I’m not bothered”” [P5, FG1]



Ability to scrutinise researcher’s decisions on numerical aspects leads to more transparency in the whole process

I think transparency would be a main thing, like how can researchers, how can organisations, how can care providers be more transparent and disclose information which allows the patient, the public, to be able to make informed decisions.” [P4, FG2]

Feeling useful

Belief that numerical aspects are crucial in the research and policy making process and, therefore, being involved in them leads to a better understanding of the pathway and higher quality involvement

“I think if I’m getting to improve or getting better at writing lay summaries, then I actually have to be able to understand the numerical aspects of the initial document that I have to read through, and then produce something which is then understandable without taking away from the meaning of the stats. [It is] about around understanding that journey, that pathway, and if you just provide the data without facilitating the understanding, then you just have numbers, you’re just dishing out numbers to someone and then they don’t understand.” [P4, FG2]

Improved research

As outsiders bringing questions in, patient and public partners can help improve the quality of the research done and disseminated

“It’s the forcing them to think outside of their micro analytical numbers based box and forcing them to actually step into somebody else’s shoes and look at the work is actually intensely important however it’s done.” [P1, FG1]

Time consuming

Involvement is time consuming and this leads to exclusion of certain groups of people which is problematic; involvement in numerical aspects of research may be challenging due to taking time both for researchers and patient and public partners

I think for the researcher, it might be if you have got too many people questioning your research, and then that might make the process a bit longer, and then you’ve got all these deadlines that are coming up with the ethics panel, and all of these findings of patients.[P4, FG2]