Professionals’ understanding of PPI

In my initial interviews I asked the question ‘what is PPI’? This tended to elicit fairly similar answers and while the question was an ‘open’ one, the answers seemed ‘closed’ or superficial, leaving little or no room for exploration. Around the third interview I realised asking the question ‘what is the purpose of PPI?’ resulted in a more personalised, open and revealing responses.

4.3.1 What is PPI?

The answers professionals gave to the question ‘what is PPI?’ were largely variations on the idea that PPI is ‘about involving people in research.’ This was most neatly articulated by Francis (CP): “It’s what it says it is. It is about involving non-professionals, so involving public and patients, so patients and carers and people who have got a personal experience of

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NL= Network PPI Lead

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epilepsy rather than necessarily a professional one”. Only one professional drew upon the different theoretical categorisations of PPI discussed in Chapter 1 ((e.g. Consultation, Collaboration and Consumer controlled, (Boote, Telford, & Cooper, 2002)). When describing what PPI is, the majority gave a range of examples of types of PPI that they were aware of, such as representatives on steering groups and PPI in the development of patient information and study design:

“It's patient and public involvement in research process. And of course it can happen at all stages of research, in the generation of research ideas, in the formulation of research projects ... in the erm... [pause 05] preparation of materials like information sheets, consent forms, in the recruitment of patients. In the analysis of data sometimes, in the communication of findings ... also patients, public are now involved in the regulation of and supervision of research so if you apply to funding bodies then they will have patient, public representation on the grant award committees, there will be, patient, public involvement in the ethics application process.” (Nick, CP)

As demonstrated in Chapter 3, professionals placed importance on ‘meaningful’ or ‘real’ Involvement, emphasising that representatives needed valid opportunities to express their views. This was intrinsically linked with their understanding of ‘tokenistic’ PPI which is addressed in section 4.5.2.

4.3.2 What is the Purpose of PPI?

In Chapter 3 I also highlighted how the professionals across the sites had different motivations and goals for incorporating PPI in their own research. However, professionals were consistent about the generic purpose of PPI. Nearly all either explicitly stated or alluded to the idea that the purpose of PPI is too ensure that research is ‘relevant’. For example: “It’s to try and make sure that the research is relevant to patients and the public,” (Alex,ND13)and: “it’s a means to root what we do in a way that is relevant to people that have the condition that we are studying” (David, CP). ‘Relevant’ research equated to ‘beneficial’ research that would be useful to the public, which for these professionals was a key aim of conducting research:

“The main goal, of patient and public involvement in research and all our activity is to produce and deliver research that is to the benefit of patients....[..]..So that is the outcome that I would want to see. It is effective research, quality and effective research that is shared to the benefit of patients. That the research is implemented into care, and treatment.” (Lyn, NL)

“The research focus shifted erm, if it’s required shifted a little towards the patient benefit, what actually patients are going get out of it, at the end of day, what sort of

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care might be influenced, erm by having a, perhaps the research question changed slightly or maybe even the approach to, to possible participants changed slightly.” (Owen, NL)

“I guess at the end of the day what we are trying to do is improve the quality of life of patients through research and surely they should have a say in how that is done and organised.” (Alex, CP & ND)

This suggests that although increased ‘relevance’ is one of the most commonly listed perceived benefits of PPI in the literature (see Section 1.6.1), for these professionals it is not just one of many benefits, it is the primary function of PPI. This was seen as particularly important because some of the professionals thought researchers have a predisposition towards pursuing a topic because they find it inherently interesting or because funding is currently available, rather than because it is potentially beneficial. This type of research was referred to as ‘navel- gazing’ or ‘having a hobby horse’. Professionals also suggested that a researcher could be pursuing a topic that they thought was useful, but in practice, the topic is unlikely to be ‘important’ to patients. They believed that PPI could help reduce the likelihood of such a situation arising, in turn increasing the relevance of research:

“There are certain kinds of research projects I have seen where I think it is a little self-serving, it is because it will produce papers, it’s because erm… it will bring in grant money, prestige, other factors there are these things to consider.” (Charlie, NL) “I don’t know if you were in the research session here this morning, but it was about experimental epilepsy and it was about studying epilepsy models that conceivably have no relevance at all to the experience of people with epilepsy. Erm, and I think it’s very easy as a researcher, to get interested in what you do, and interested in what your peers are doing but to have no focus whatsoever on how this translates into patient benefit. And, I think it’s also very easy to assume that we know what patient benefit is, when actually most of us in epilepsy research don’t have epilepsy. So I think that grounding what we do, rooting what we do, in terms of a clear and knowledgeable focus on what will be to the benefit of the people with epilepsy is essential, and certainly for me that’s where PPI involvement becomes crucial.” (David, CP)

“The hope being that that would, you know, increase the chances of you answering questions that mattered to patients. That you come to some sort of agreement between what the doctor thinks is important and what the researcher thinks is important with what the patients think is important because they are often not the same.” (Francis, CP)

This supposition is supported by Boote et al’s (2012) reflective case study on how PPI led to researchers abandoning a proposal based on representatives’ feedback, even though it had received positive interest from other professionals. Some of the professionals also highlighted that PPI is likely to be most effective in ensuring relevance if it occurs during the prioritisation and design stages of the research process:

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“By having involvement at the very beginning of this trial design, not just when it comes to designing the patient information leaflets, then you know there is more chance of it being relevant to the public and you know, so that’s I think that’s the ultimate goal.” (Adele, NL)

In addition to increasing relevance of research, some of the professionals thought that the purpose of PPI was to improve the research process by drawing on different points of view and experiences. These issues were covered in more depth when I asked professionals about the broader perceived benefits of PPI. Therefore, in line with how the professionals framed these issues, I explore them in more detail in 4.4.