Table 1 Barriers to power-sharing in health research.

Personal factors

Lack of buy-in for engagement in health research

By researchers: “I think a lot of researchers, it’s quite a burden so then they see it as something that now they’re being pushed to do more and more, they see it as very time consuming. A lot of researchers question its value, especially some of the researchers that I’m in touch with who are doing quite sort of basic scientific research.” (engagement practitioner, UK)

By patients/public: “Communities don’t see research as relevant to their lives.” (engagement practitioner, Australia)

Devaluing knowledge of people with lived experience and members of the public

“I was the only patient advocate in a room of thirteen people, and there was a person there representing a fairly high level of healthcare who obviously didn’t feel the need for a patient in the room. And, I felt that animosity, you know. I’m experienced enough to not, it doesn’t bother me and I can deal with it, but I know that it still exists because people at your level for instance, who’ve spent years and years and years getting your qualifications, find it difficult sometimes to accept a patient into the group who obviously doesn’t share your level of skill.” (person with lived experience, UK)

Internalised powerlessness of people with lived experience and members of the public: Don’t see selves as equal to academic researchers

“I guess for me, being really honest about it I always thought I wasn’t a real researcher, like I always had this kind of niggling feeling of they, the university researchers are the real researchers and that’s just really like a confidence thing and an internalised ableism and an internalised elitism but it was a kind of unconscious thing for me is that I’m not a real researcher, I’m just someone here coming in to kind of you know ask questions and help with a few things… And it’s really hard to battle that, even though you know you have people who are so supportive and being no we want you to inform the research and then they’re really bringing you to the table with it.” (person with lived experience, Australia)

“They’re the experts you know. We don’t know enough about medicine and medical procedures to question their judgement.” (person with lived experience, UK)

Feeling intimidated due to education and class disparities

“There will be some people who perhaps are not well educated, who would be frightened by being involved in something like that, but I guess you could say that they’re the sort of people that need to be.” (member of the public, UK)

“Now most of the people I know with a mental illness they wouldn’t do that, do you know what I mean, it’s the last thing that they’d do…I think they would feel frightened, they would feel intimidated… I think it is the whole the not knowing, the intimidation, the oh is everybody gonna be all dressed up posh and I’m gonna be wearing my you know stinky hoodie that I’ve worn for the last week, do you know what I mean?” (person with lived experience, UK)

Lack of awareness of engagement in health research

“There’s not enough people out in the general public even know that it’s possible to get involved.” (member of the public, UK)

Lack of knowledge about research or lack of engagement experience

By researchers: “Their view of co-design was far more tokenistic than mine; you kind of read the rhetoric around involvement and they go oh yeah, yeah, yeah, we want that but they don’t really know how to do it, and they also don’t really appreciate that they have to give up power to do it.” (engagement practitioner, Australia)

By patients/public: “Initially I was rejected only on the grounds that I was starting the patient public involvement journey and the panel, the professor and the other academics or clinicians on the panel felt that at the time I did not have sufficient PPI [patient and public involvement] experience to sit on the panel.” (person with lived experience, UK)

Too much knowledge (scientific or medical) or engagement experience

By patients/public: “There are researchers that only want to work with kind of new patients, the patients that haven’t been involved in patient involvement before… because the rest of us become almost trained in what to look for, so we identify the weaknesses and the strengths and things like that.” (person with lived experience, UK)

Illness

“Patients can’t travel a lot… So our disease limits us as well you know, it’s a barrier to us as well cause some people just don’t have the energy and are very sick and even on dialysis you’re alive but you’re not, you know, you feel crap.” (person with lived experience, Australia)

Relational factors

Playing favourites amongst those engaged

“But then I noticed, and I would pick up was that I would say something exactly the same, and it was not acknowledged, and then the service user would say exactly what I have said in different words, they’d [the researchers] be like that’s a really good idea, oh yes we should put that, and that’s really important and thank you for bringing that up…it’s almost like they’re [the researchers] pampering one and then absolutely disregarding the other one…making a lot of fuss over your colleague, oh would you like coffee, would you like drink, let me get it for you; how was your holiday.. and then just absolutely just not acknowledging you at all. You will start to feel like undervalued and not important and uncomfortable. But… you can’t go to somebody and say you know I’m sorry but I feel belittled and I feel a bit discriminated or I feel victimised.” (person with lived experience, UK)

Cliques amongst those engaged

“I think the worst ones are the ones where they’re almost personal friends of each other, they work together every time they’re on a research project and it can be really, really hard to break in then, like I said get a word in… [It] happens quite a lot locally and ends up with a few people dominating conversations.” (person with lived experience, UK)

Environmental factors

Technology

Technology: “Often city people can get involved in things cause they can go to meetings or they can go to stuff but it’s barriers with rural people because not everybody has the telecommunication or the you know Wi-Fi, I mean certainly in our area a lot of our, our guys have any. They don’t have an iPad, they don’t have Wi-Fi, they don’t have the ability or a phone, you know they have the old home phone still, it’s all they can afford and you know that’s barriers to people actually being involved in research.” (person with lived experience, Australia)

Getting diversity

“A lot of the PPI contributors and patients I work with are retired, in fact the majority are retired, and they’re older people and trying to get diversity and a younger voice or, and it’s a cop out to say, but it’s particularly difficult. But it’s a very educated, very white, very middle class you know area. And that there are obviously you know areas of diversity and lower socioeconomic group and different ethnicities, but the majority of people who we reach, as I say, we need to do better, we need to try harder to reach those sort of other groups.” (engagement practitioner, UK)

“Traditionally in the UK the lay representatives, PPI representatives tended to be white, males and often retired. Over the years, white, female have made inroads in patient public involvement work…but on the funding panels we’re still not seeing enough people from different ethnic minorities …we do not have enough Chinese, Pakistani, Muslims.” (person with lived experience, UK)

Bureaucracy

Lengthy application process and numerous selection criteria for patient and public involvement positions: “For me, that’s the kind of example of the kind of cultural imperialism of you know of PPI is you know well you can come and sit on our committee but only if you tick all these boxes.” (engagement practitioner, UK)

Selection criteria included: being a health service user, having computer literacy, having a high reading age, having an interest in the subject, committee experience or at least being able to talk to people, and “increasingly they’re asking volunteers about their networks as well which is a really, really hard one because they expect you to have links to charities and hospitals and clinicians and all this kind of thing.” (person with lived experience, UK)

Logistics

Distance: “I suspect there’s a lot of people who might be interested, who would be quite happy to do something more local to them if it was one afternoon or evening in their local GP surgery for example, or in the local primary school. Because it takes a bit of effort even if you can afford you know the bus fare and train fare, even if you, you know you are interested in these sort of things generally, it still takes a bit of effort.” (member of the public, UK)

Time

“It takes a lot of time to do consensus decision-making and to do genuine co-design.” (engagement practitioner, UK)

“Timing is really, really hard because most positions are voluntary and held within kind of working hours.” (person with lived experience, UK)

Language

Using scientific jargon and conducting engagement solely in English: “Well I think part of it is language that is used, so the academics and clinicians making sure they don’t use jargon or technical language that a lay person may not understand.” (person with lived experience, UK)

Lack of or insufficient compensation

“Payment in the UK is such a tricky issue. They would have been paid but it would be nowhere near like you know a fulltime wage or anything. They would be paid for the hours that they put in according to the guidelines that are setup by Involve, which is the organisation you may have heard, you know it’s kind of its, basic rate is sort of a hundred and fifty pounds a day.” (engagement practitioner, UK)

“When I went to London they, they gave us travel although they only gave us thirty pounds, which doesn’t cover a peak time rail ticket to London, but it was something and they gave us like a voucher as well, you know, you could spend it at the shops.” (member of the public, UK)

Funding

Engagement not funded pre-grant: “I know funding constraints don’t always allow this but what if you even just got in a group of community researchers and then let them direct the project. Like I know that’s really hard because you know you get a grant around a particular topic area but and then kind of that’s already set so there’s like particular parameters around that.” (person with lived experience, Australia)

Funding criteria about engagement absent, not enforced, or not weighted strongly: “They may be not always as firm as they might be about how many different stages that PPI involvement happens in, so I think sometimes it’s still possible to get quite a long way through the research and then to think oh I need some PPI involvement, you know, get together a little group, get some comments, make a few changes maybe.” (member of the public, UK)

Engagement cut from grant budget of funded project: “PPI is resource that often gets cut from collaborations’ bids.” (engagement practitioner, UK)