Blurring of roles

In Chapter 3 when describing the PPI process in the comparator network, I raised the point that Jess and Tom did not feel they treated the representatives in the same way they would other colleagues (see Section 3.2). They linked this to the issue of professional boundaries and the blurring of their roles as researchers and clinicians. While issues of role uncertainty and clarity were touched on by many different professionals, as reflected in the latter parts of this section, they were particularly important for Jess (SS1), Tom (SS1) and Nick (CS1) who were my only informants with a clinical relationship with the representatives outside of the research. The approach to PPI adopted by the comparator networks involved frequent sustained interactions with the same representatives. Tom and Jess felt this compounded difficulties related to professional boundaries, raising the dilemma of how to maintain a working and potentially a more personal relationship, with representatives while still maintaining enough professional distance to work with them in a clinician-patient capacity. Jess and Tom both gave long detailed descriptions of their concerns:

“The other thing that I found really hard is that, as a clinician or as a doctor, you’re trained to maintain professional boundaries. That these are your patients that you care for them, you provide a service to them, and so I found it increasingly different, difficult that these people I was beginning to care about, I cared about them a lot, um, and I worried that we saw them in a research capacity, but then Tom would see them in clinic or I would see them in my other role, un, and I find that, I found that really difficult but actually I am beginning to become more comfortable with that. ..[..].. I actually have begun to like the fact that they are my friends and not just

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people of the RDG but I to start with I found that very, very difficult...[..].. I do think that that is a really important point about involving people in research that, that you will, they will become your friends, you will begin to care, and you can’t then provide them a service. So, yeh I guess I found that really hard. Lots of people have since told me that I guess its expected to kind of run into these kind of troubles, if you are going to get close to a group of patients, and you can’t expect to please everybody all of the time. So I guess they for me are the two flip sides, that I don’t feel like we are giving them enough, and I think sometimes there are issues about professional boundaries, and that you have to acknowledge whether you are just going to forget them, or whether you are going to try and maintain them for the benefit of what you are doing. But I think people need to have that discussion with themselves.” (Jess, NC)

“Then people ask about er professional barriers, so people ask about epilepsy advice, you may have met them once in clinic, you may not know them at all, you may know a bit about their epilepsy from what we have talked at the table you may not know and you have got to be very careful about what is general sensible advice about epilepsy and what is specific advice. And particularly you don’t want to be getting sucked into giving advice about changing drugs, urm drug doses particularly if you are not the regular er physician, it’s much safer to say this is sensible advice, contact somebody or you know, or I will arrange to see you, I will arrange a clinic appointment, probably I won’t arrange to see you because I think once I see them outside uerm I would probably prefer a um colleague to see them in clinic. Um I wouldn’t have a big problem with it but I think it might just be a little bit easier. Um I mean in terms of professional boundaries, yep, we are not dating anybody on the group you know, its, its, we’re not that intimate but you could end up giving somebody a lift to the train station and you get a little bit of your professional identity chipped away when they are sitting next to you in the car and they are seeing you, you know are sitting down having a cup of coffee and maybe that’s a good thing, but I have to be aware that it is happening. Erm, so we don’t give out our mobile phone numbers to people, in the group. Urm, and yet I would accept a number from someone else, or their e-mail address and so there is always a bit of power imbalance there, you wouldn’t say it was a partnership and they are all co- equals, but there is a bit of a power imbalance because I don’t want to lose the ability to be their physician, ur their clinician at any stage.” (Tom, CP)

That the RDG group was meant to be led by the representatives and only facilitated by Tom and Jess also exacerbated role issues. They were not meant to be present in an authoritative or leading role. However, they felt they needed to take control of and guide the group to ensure it achieved its aims and acted on their suggestions, and these were two contradictory positions to hold. This difficulty did not seem to arise in the other sites. Rather the professionals at the other sites seemed to pre-empt potential role uncertainty and boundary complexities by having clear views on what was their role and what was the representatives. Therefore, many of the professionals did not think that the representatives needed extensive research knowledge as they considered it the professional’s role to direct the research process and the representative’s role to provide experientially based advice.

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The other professionals also avoided issues of power discrepancy as they did not aim to be equal in the decision making process.

The influence of the particular PPI approach adopted on boundary complexities is demonstrated by Nick’s account (the other professional with a clinician-patient relationship with his representatives). Nick did not express the same concerns about boundary issues as Tom and Jess. However, he believed that his role as the representatives’ doctor had an inhibiting effect on the PPI process, that because they were used to being his patients they were less likely to be forthcoming in their discussions (this is something I noted in my fieldnotes and was also raised by the representatives, see Section 5.6). Nick found this frustrating because of the time it took in meetings to get representatives to relax enough to contribute, and also that he was present at the meetings in the first place because he wanted to hear their opinions:

“I often don't go for the whole meeting, in part because I think I might inhibit what they would say and they might be more open when just Rachel is there. Because I think there is still this doctor patient thing going on, I don't know will it ever go but erm... I think at the moment the reality is lagging behind our aspirations. Erm... it maybe my fault you know that I am somehow not, fault is a bit [30.26] sounds a bit depressing anyway maybe that I am not involving them sub optimally or... or, somehow I am not communicating clearly enough what does it matter but it still feels, like every time we meet I have to reannounce the framework you know, explicitly state, this research... we are meeting here because we are really interested in what you have got to say and so you know I have to kind of you know officially, erm... empower them to speak you know and if, if the situation was what it is intended to be, then that shouldn't be necessary but it feels like it is. Maybe if I just sat there and said nothing they would start piping up but I still feel the need to announce the sort of you know to define the setting, in this setting it is ok for you to speak, I am a doctor but you know I really am dependent on you and you know you really must have your views and very much cherish your input all this sort of stuff… what Rachel tells me and you know it always seems that the more interesting stuff happens after I have left so you know that's fine. Initially I think I was there for the full first meeting probably but after that I started to only come in for the beginning or part of it. ... sociology seems to get in the way, of what we want to achieve you know, we want to achieve this level playing field partnership situation, but it just isn't there, ((laughs)) it ain't possible, sociologically, so you have to kind of bridge this gap and it involves a lot of heavy lifting on both sides and so the patients have to give themselves a push I am going to say this although it's the doctor here you know although he knows so much more than me but I am just going to risk it.” (Nick) This frustration about representatives not voicing their opinion was echoed by some of the other professionals. In Chapter 5 I address this issue from the representatives’ perspective and discuss some of the reasons representatives believed that professionals would prefer to hear from their colleagues rather than from them, and as such might refrain from

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speaking. When I discussed this with the professionals, they adamantly disagreed, saying that in this context they would prefer to hear from the representatives as they have more opportunities to access the views of their fellow professionals than they do to access the views of representatives:

“Yes but we get professionals’ views all the time, we need the patients view ((laughs)) there needs to be time set aside, or there needs to be equity of access to comment really.” (Alex, ND)