In my review of the literature I concluded that there is very limited evidence about the positive or negative effects of PPI on professionals. This gap in evidence might be partially explained because the benefits to the researcher (the main subset of professionals) and benefits to the research process were viewed fundamentally as one and the same by professional informants. Since much of their professional identity was linked to the research process, anything that benefited the research was also perceived as directly or indirectly benefiting them.
4.4.1 Increasing relevance
Given that most of the professionals perceived increasing the ‘relevance’ of the research to patients as the primary purpose of PPI, it is not surprising that this emerged strongly as an apparent benefit. What is interesting here is how the professionals saw PPI impacting on them personally and, in turn, the relevance of the research. They felt that PPI helps: “reminds us why we are here” (Sara, NL) and: “I suppose it brings them [researchers] back to reality”(Adele, NL). Alongside increasing motivation for their work, PPI was seen as bringing the need to be ‘outcome’ or ‘patient’ focused to the forefront, the logic being that if patient benefit is an aim of the researcher it will be translated into the research process, increasing the likelihood that research and its outputs are relevant. This would especially be the case where representatives were helping to confirm what is and what is not relevant:
“Going back to my initial point of patient-centric research, you know it reminds you about why, why you know people do their 12/14 hour days, you know why people do go the extra mile when they have to write grants and, erm, papers, and it is, you know it is really about urm, you know a difficult, chronic, community based- condition, which needs far more multi-disciplinary approaches.” (Lee, CP)
104
“I think the group erm reminds us of what we are doing and who we are doing it for, not everybody in the group has the opportunity to go to epilepsy clinics, meet people with epilepsy face to face.” (Tom, CP)
In addition, having representatives’ confirmation that they considered the research to be ‘relevant’ was reassuring to some professionals. This reassurance could help increase their own confidence in the research question and could also be used when justifying the research to others:
“We were able to feel confident that we were asking questions and trying to answer them in a way that was relevant to patients.” (Alex, CP & ND)
“Just to hear that people are happy with what we are planning really, you know when we ask them about... [..]..to hear from them straight away what they would think about receiving this sort of thing erm… and to hear from them that they thought that it was a positive, … [..].., I went down to give a presentation the other night and someone asked me a question. And I said well funny you should say that because our, you know research user group, said….“ (Rachel, RC14)
4.4.2 Gaining funding and ethics approval
Although, superficially, funding and ethics are two different elements of the research process, the professionals believed that PPI has four potential ways of influencing both of these elements. Firstly, when submitting an application to either an ethics or funding panel it is likely that applicants will be asked whether they have involved or intend to involve representatives. A positive response was seen as potentially increasing the likelihood of gaining ethical approval or funding: “From a rather slightly flippant administrative point of view it means you, you have ticked that box on the application forms” (Alex, ND).
Secondly, many ethics and funding panels have patient or public representatives as members. Having PPI in place prior to a panel’s review of the funding application was seen by some as pre-emptive, in the sense that it helped to address any potential issues about the research that the representatives on the panel might have. This may reduce the chance that an application would have to be resubmitted based on the representatives’ comments: “The funders are using erm, their patient groups to, to comment on what might be a, an interesting study, something they might be interesting in taking part in. So I think it sort of closes the loop a little bit really, that the patients are commenting on that, as lay members do on ethics committees too. Actually having the patient early just solves problems that may come along later.” (Owen, NL)
Thirdly, PPI was seen as providing evidence to the panels that the research was ethical or relevant:
14 RC= Research Coordinator
105
“It’s that word of mouth that perhaps actually getting patient input early seems to work. Erm, I think it does, I think sometimes the erm, the applications that go in will say we have talked to, to some patient groups within the network or outside of the network and discussed this with, with them before, or during, the er sort of preparation for the proposal and that, that seemed to carry some weight especially with, erm, with lay reviewers.” (Owen, NL)
Fourthly, and arguably most importantly, some of the professionals expressed the belief that PPI does actually make research designs more ethical and more relevant and, as such, more likely to be successful at the funding and ethical approval stages:
“There has been a few cases where the parents especially have said, actually you know this, is unethical to do this research as it stands, as it’s designed like this and you know, and suggested ways to make it ethical.” (Adele, NL)
Alongside the professionals’ wishes to undertake relevant and ethical research was the more pragmatic acknowledgment that research is a slow process and anything that can expedite it was considered advantageous, or as noted by Charlie (NL): “things getting through Ethics Committees quicker will please researchers.” Professionals’ perceptions about how PPI can impact on the ethical aspects of research overlap with those identified by INVOLVE. INVOLVE’s (2012d) review of ethical aspects of PPI in three literature reviews identified five ways in which PPI can potentially make research more ethical: i) making research more relevant, ii) helping to define what is ethically acceptable, iii) improving the process of informed consent, iv) improving the experience of participating in research, v) enhancing the dissemination of research both to the participants and the wider public.
4.4.3 Increasing recruitment and retention
When discussing the potential positive impacts of PPI, the professionals identified a variety of different benefits to the research process, including access to ‘a different perspective’, better communication and increased networking and dissemination. These were linked by the belief that improving these areas of the research process would improve recruitment and retention of participants to research studies.
The professionals strongly valued PPI as an opportunity to ‘get a different perspective’. They believed that representatives’ perspectives were grounded in their personal experiences of being ill and receiving treatment (or caring for those that have been ill). These experiences were seen to give representatives important and unique knowledge only available to those ‘within’ the condition. Consequently having PPI was seen as a way for professionals to draw on information that they could not access though any other means:
106
“That although I am cynical about PPI, what they [representatives] will provide is a unique and interesting perspective because that perspective will come from something that none of us possess and that is the experience of being ill with that particular condition, with epilepsy.. and that is a unique perspective.” (Lee, CP) “The benefits of having that patient perspective is so valuable because they bring a different perspective to the table, and very often things that your agenda is not even addressing, you are not even thinking about it.” (Fred, NL)
Within the literature this type of embodied knowledge is sometimes referred to as ‘experiential knowledge’ (Caron-Flinterman, Broerse, & Bunders, 2005). It is this experiential knowledge that representatives use to make judgment calls about the relevance and practicalities of a research aim and design. The validity of making research decisions based on experiential knowledge, which by its nature is subjective, has been debated in the literature (Caron-Flinterman, Broerse, & Bunders, 2005; Popay & Williams, 1996). It is clear however, that professionals in the present study thought such experiential knowledge could help improve the research process and, in turn, believed that improving the relevance and design of research would result in higher participation and retention rates:
“Things that can seem small, like taking a certain question out of a questionnaire, all those sorts of things, just erm… You know research is difficult enough and particularly in these sorts of patient groups, and so, anything you can get really that is going to be a potential barrier and is going to mean that you lose people along the way, if they pick up on those straight away and we can take them out you know before we even start the research, then potentially really beneficial.” (Rachel, RC) “If trials are well designed then they are more likely to retain, you know, the patients in the trials as well.” (Adele, NL)
One of the most common forms of PPI is obtaining feedback on recruitment materials such as participant information sheets, the intention being that if participants can better understand the research being presented to them and see why it is relevant, they will be more likely to participate:
“So that if somebody is approached about it, that they can actually see the benefits that that research may give to the wider public. Erm which sometimes is not always obvious for the general public and for those being approached, I think sometimes they will look at certain studies and just think, “well what the hell has this got to do with me?”, where I think some good patient / public involvement early on could actually make it far more obvious to participants so I think that helps on the recruitment side.” (Owen, NL)
Some of the professionals felt that PPI could help improve verbal as well as written communication. They openly acknowledged that communication between academics and the general public in the research process can be far from ideal: ”I think up to now the
107
research community has been relatively poor in erm, in really communicating with the general public” (Owen, NL). By interacting with representatives who have a remit to say when something is unclear professionals saw PPI as giving them an opportunity to have their assumptions about what is common knowledge challenged and could adapt how they communicate accordingly:
“I have to sort of kind of think, oh hang on I had better not use that jargon, and I think that’s, that is a good thing, I think that can only be a good thing if we start discussing research in ways that are understandable to non-academics. I hope they [representatives] will just sort of, facilitate that. ..[..]..There are times that I think they have struggled a bit with the language. I think that actually is good for us because it makes us as I say, re-explain things, or clarify or you know things that seem obvious to you as a professional who has been working in epilepsy for 20 years, then sometimes it does need someone else to kind of go “sorry I have absolutely no idea what you are talking about” ((laughs)) for you know to realise you are making assumptions about people's knowledge.” (Francis, CP).
If somebody says OK we need to be looking at voltage-gated potassium channels in Rasmussen’s syndrome, you know I think I need to translate erm, and hopefully other members of the committee will start to [02] maybe communicate a little bit more clearly, and in a way that a lay person would be able to erm, helpfully understand and engage and contribute.” (David, CP)
Lastly, the professionals acknowledged how useful PPI could be in the dissemination of information about the research. While a couple of researchers speculated that representatives might be useful in disseminating the findings of individual projects, most focused on the representatives’ abilities to raise awareness of specific research projects or the research network as a whole though their social networks. There was always the chance that a representative interacting with their peers might mention a research project to an eligible friend who was not aware of the research. On a larger scale, a representative might also take part in other research projects or belong to charity groups, hence allowing access to a larger group of potential participants (e.g. through a website) or interested colleagues:
“Another benefit is those lay people can sometimes act, they will sometimes mention the network when they are wearing other hats, so if they are patient, public involvement person in the network they might also happen to sit on their local erm... PCT or whatever they are calling them in the future erm.. Patient board or that, and they might raise research issues there.” (Fred, NL)
“Here are some very concrete benefits, such as improved recruitment into studies, erm, so for example where we have collaborated with erm epilepsy voluntary sector organisations, they have then publicised the research to their membership er and that has given us access to a whole new pool of research participants, that we wouldn’t necessarily have seen through our clinics.” (David, CP)
108
As previously noted, failure to recruit is reported as a primary reason for non-completion of clinical trials (McDonald et al., 2006; Watson & Torgerson, 2006). Non-completion of research can be detrimental to researchers’ careers and PPI was sometimes valued for these potential and varied ways it might prevent this from happening.