Dave G
Dave has been doing PPI in health research for about four years. He started as a member of a community panel working to improve patients’ experience in hospital before getting involved with a research project.
Dave is married and has one daughter, who is 30. He is retired, but worked as a deputy head teacher in a junior school. Before that, he trained as a nurse. Ethnic background: European.
More about me...
Dave is a member of a community panel that works with hospitals to improve patients’ experiences. The panel was informed about a research team that was looking for citizen researchers to do some PPI. So, Dave volunteered and, after a preliminary interview, he and another person became members of the research team. Initially he didn’t understand what was going on and felt quite intimidated by some of the language people used. He started off feeling bewildered, then slowly began to acclimatise before having a ‘breakthrough moment’ where he realised what he could bring to the project, and that’s when he felt he started to be productive.
So far in the research project Dave has observed focus groups and analysed the findings, attended conferences and given presentations about his experience of PPI. As well as gaining a lot of knowledge about research, he’s had a lot of fun doing PPI and thinks it has helped build his self-confidence. He believes that you make your own involvement by being proactive and coming up with ideas and suggestions rather than waiting to be told what to do. This involves working as part of the research team, respecting the people leading the team, and understanding where you fit into its structure.
When he got involved in PPI, Dave didn’t really receive any training. He would have liked to have done an introductory course to learn about research methods. He thinks there should be some sort of qualification that citizen researchers could do to train them for PPI and to help researchers choose people to work with. He believes it is important for citizen researchers to be professional, work as part of a team, read around the research area, be able to listen and be committed to doing PPI.
Dave feels well supported by the researchers he’s working with, but thinks researchers in general should be educated about the benefits of including citizen researchers in their work. He thinks citizen researchers are important because they bring variety and experiences that researchers may not have had, but it is difficult to get people from all backgrounds involved in PPI because of work or other commitments. He would encourage other people to get involved saying, “It's really rewarding and you're making a real contribution to research”.
Dave G got involved through his local hospital because he was bored and wanted something to do.
Dave G got involved through his local hospital because he was bored and wanted something to do.
Because I was bored basically and I do believe I was shuffling along the road to the dusty death and I thought, 'Well I'd better keep my brain alive, I want to interact with people’, so that was basically what I did it for. I'd like to quote some high ethical motives but no it was really just interest for me. That's what it was about.
And has that motivation been fulfilled since you started?
Oh yes fully, yes I spend about four days a week down there at the hospital doing various bits and pieces: research work, committees and groups and things like that. So yes it's a big part of my life now and I thoroughly enjoy it, I really do.
Dave G has helped recruit patients, give presentations and analyse data from focus groups.
Dave G has helped recruit patients, give presentations and analyse data from focus groups.
Dave G strongly feels training is essential. He disagrees that being well trained means you become ‘too professional’.
Dave G strongly feels training is essential. He disagrees that being well trained means you become ‘too professional’.
It’s important to be professional, read up on research and be committed to involvement.
It’s important to be professional, read up on research and be committed to involvement.
When you said, the first one you said was professional – what do you mean by you have to be professional?
You have to relate to people in a team as professionals and the certain rules you have. You don't go talking behind people's backs; there's certain confidentiality there. When you're in a meeting you obey the rules of the meeting. You don't pursue your own agenda and disrupt the meeting. It's pretty obvious really. You work as part of a team, that's what professionalism is about. I don't curse people behind their backs, I don't spread gossip about the team leader, I don't undermine the project for my own dubious reasons. I act in a professional way in which I'd expect people to act towards me.
Dave G found his first meeting completely baffling. It was only pride which stopped him from giving up.
Dave G found his first meeting completely baffling. It was only pride which stopped him from giving up.
And we got a hand-out which described the project and it talked about a triple step, triple step wedge theory. And quite frankly I really hadn't the foggiest idea what they were talking about, so it was extremely intimidating, the first couple of sessions and I thought I was really out of my depth. In fact I've invented what I call the Green's Taxonomy of Patient involvement. I've actually done this in a PowerPoint and I present it at times if I'm asked to present about PPI work, I present this. It starts off with utter bewilderment: what am I doing here? I haven't the foggiest idea! Dear me, I'm out of my depth, you know. Let me out of here. And then slowly begin to acclimatise to what, what's happening. And then eventually you reach the stage where you understand most of it and you feel, I call it the breakthrough moment when you think, 'OK I know where I'm at, I know what I can do, I know my limitations, what can I do to push the project forward?' And that's really when you start being productive.
And what prevented you from running away after that first meeting?
Pride.
Right.
I don't like giving up on things. If I commit myself to something I like to see it through unless it's painful in which case obviously not.
Dave G would not want to feel like a paid employee. Enjoying the work is all the reward he wants.
Dave G would not want to feel like a paid employee. Enjoying the work is all the reward he wants.
So you're not answerable to anybody?
I'm not answerable to anybody.
That's give you a bit of freedom.
It's, what is it, responsibility without something or other? Responsibility without accountability yeah, but you have to be careful, you can't, you have to be professional about it.
How does it feel when you know that, you know you're at these meetings and everybody else there who isn't a citizen researcher is being paid for the work that they'd doing and you're not? You know the professors and the doctors and so on, does have that any impact on you?
Not in the slightest. What I get out of the studies is much more than payment, it's much more than payment.
And what do you get out of them?
I get a great deal of self-confidence; I get a get a great deal of knowledge; I relate to people; it keeps my brain alive, one of the many things which keeps you living for a long time yeah. It's a relationship with people, relationship with the study and looking at it and thinking about it and reading around it, yeah that's the recompense for me; I mean I'm not bothered about the money.
And did you ever think that you would be doing this in your retirement?
No, no. I think my life has completely opened out since I retired. In fact I think this is about the best part of my life actually.
Dave G has gained self-confidence, knowledge and great enjoyment. In retirement he has finally found the right job and feels appreciated.
Dave G has gained self-confidence, knowledge and great enjoyment. In retirement he has finally found the right job and feels appreciated.
And did you ever think that you would be doing this in your retirement?
No, no. I think my life has completely opened out since I retired. In fact I think this is about the best part of my life actually.
Really?
Yeah.
Why's that?
Well, I joined, I joined the Air Force at sixteen, became a State Registered Nurse. I've never really liked nursing to be perfectly honest with you. Became a teacher. Perfectly honest with you, I've never really liked teaching; I couldn't wait to leave a classroom. I should have been a librarian or an archivist. I'm an introvert so I don't relate well to groups and people. You know, stick me in an archive filing documents and, you know, shelving books and I'd be perfectly happy. I was in the wrong job. And this has really been something I've really liked doing. I felt at home doing it. And I felt people appreciate it as well and it's lovely to feel appreciated, it really does. If I was paid you wouldn't get that appreciation, you wouldn't get that, I don't wallow in the gratitude but it's nice for people to think, 'Well thanks Dave, you're doing that and that's a good job well done.' And that goes a long way.
Dave G doesn’t feel like a professional patient, but his experience means he’s a more informed citizen researcher.
Dave G doesn’t feel like a professional patient, but his experience means he’s a more informed citizen researcher.
So that threw me back because I wasn't quite sure what a professional patient was and am I becoming one? I don't know. It made me think very hard about what my role was and what I was supposed to be doing.
And what did you come up with? I know you sort of mentioned this earlier on but in terms of you being a professional patient?
I decided that I wasn't a professional patient. I didn't understand the term. I was becoming a much more informed patient, a much more informed citizen researcher if you like and I could do the job better because I understand what research was. I had a lot of confidence in how research goes forward. I wasn't frightened to make my views known in a professional way within the group and if that’s being a professional patient then I don't know what a professional patient is. I'm not a professional patient. I regard that as an insult.
Dave G advises researchers to select people carefully. He’d like to see a citizen researcher training course to create a pool of qualified people.
Dave G advises researchers to select people carefully. He’d like to see a citizen researcher training course to create a pool of qualified people.
And how do you think researchers can go about finding the right people?
I do think there should be some, as I've said, some degree of training, some qualification, if you like, as a citizen researcher either internet-based or perhaps run at universities, and there you have the pool of people who are qualified in a degree to be citizen researchers. And if say this university you have a pool of citizen researchers and I'm at the department and I want to involve patients, then I have a people there I know have been recommended, have been screened, have been trained to a certain degree and are reliable and I can use them, rather than picking someone from the community because, you know, we must have balance here, so we'll pick this one from community, and they turn out to be a disaster. I've actually been Chair of some, of a committee of a group that was running with the PCT before that went down the plughole. And we've had people on there, patient participants on there who quite frankly have been disruptive and it's been an embarrassment as Chair to have to say to someone, "If you don't actually stop being disruptive we'll have to kick you out of the group altogether". And that's really, I find that quite distressing. So I do believe patient participants need to be screened and need to be trained.
Dave G thinks it’s unclear who is or isn’t a patient. He prefers the term ‘lay researcher’.
Dave G thinks it’s unclear who is or isn’t a patient. He prefers the term ‘lay researcher’.
Dave G thinks there has been a cultural shift towards empowering patients. Some researchers may feel threatened by it, but partnership with patients is here to stay.
Dave G thinks there has been a cultural shift towards empowering patients. Some researchers may feel threatened by it, but partnership with patients is here to stay.
I think a lot of it is, it's a culture change within the academic community and some people have made this culture change and some people haven't. But I do believe that with the, especially with the Francis report*, I think that's been a whole nest of hornets kicked over and we have a new paradigm now, which is patients will be involved more in monitoring what a hospital does and by implication, monitoring what research does by working as part of a research team. Not as a patient participant who is fed bits of scraps and is there because they are the token participant. And I believe actually to get a research proposal passed these days you have to have patient participants. That's why I say it's not just, oh you have a token participant, you sit there and you say nothing and you can tick the box and everything's fine. You need to be genuine researcher but you have to choose your patient participants to take part in research very, very carefully because there are people out there who will, quite frankly, disrupt any research team. They have their own agendas and you will destroy in your research team, you really do have to be careful who you recruit to be a patient participant. They need that level of commitment and professionalism.
* The Francis Inquiry into poor patient care at Mid Staffordshire NHS Hospital Trust, which published its final report in 2013. This led to a number of government policies around listening to patients and improving care.