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Nadeem

Age at interview: 57
Brief Outline: Nadeem has been trying to get involved as a patient and public representative in health research for about five years, but so far has been unsuccessful.
Background: Nadeem is married with two children, aged 29 and 27. He used to work in local government and now works as an assistant manager in a small retail outlet. Ethnic background: British Pakistani.

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Nadeem is interested in becoming a patient and public (PPI) representative in health research and, despite several attempts, has been unable to get involved. He has attended a workshop about PPI and knows a bit about it, but would like to find out more about what it actually involves by talking to someone who is already doing it. He thinks the goal of PPI is to improve research by being a “critical friend” to researchers and that key skills used by representatives include patience, tolerance, a sense of humour, belief in what you’re doing and the ability to work within a professional environment. He doesn’t think getting used to the technical language that researchers use would be a problem because of his experience working in different roles in local government over the years. 

Whilst he would be grateful if the PPI role was paid, Nadeem thinks it’s important that this doesn’t result in people doing it solely for the money; they should do it because they are committed and want to contribute to the greater good. If he were to become a PPI representative, Nadeem would be interested in taking part in research on smoking because he is a smoker, diabetes because his late father was a diabetic, on bone illnesses because he used to suffer from back pain in the winter and on conditions that affect South East Asians.  

Being from an ethnic minority community, it is important to Nadeem that he isn’t involved in PPI simply because he is seen as different. He wants to be involved because of the value he can add. He feels that the reason that few people from ethnic minority backgrounds get involved as lay representatives in health research indicates a failure in the system. He also thinks there is a lack of knowledge and understanding about PPI amongst the general public and that this should be addressed by engaging with communities. He feels strongly that this should not be tokenistic and should happen on a regular basis.
 

Nadeem thinks he could be a ‘critical friend’, reminding researchers of the human side and sharing knowledge of different communities.

Nadeem thinks he could be a ‘critical friend’, reminding researchers of the human side and sharing knowledge of different communities.

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Three things that come to mind straight away, yeah. One is being the researcher's critical friend, yeah? Because, with the greatest respect, you know, once you get involved in something one starts looking at the research bit, but not the human bit, yeah. So you can have kind of sort of the critical friends so it's a bit like, "Well this is what I'm intending to do, what do you think?" Yeah. That's one, so but one is a critical. The other one is a little bit of body of knowledge that one has you know. You are expert in your field yeah in the sense that you've gone through the research, so you're a researcher, you know ins and outs of what's required, what's not required, but you may not know about the communities yeah, whether it's communities of interest, whether it's communities of nationalities whatever. So a little bit of that understanding. And I'm fortunate enough to be in a position that I've had nearly thirty years' experience in this part of the region and in particular [city name], on race diversity, asylum, migration, refugees – so I have a little bit of understanding. But not only that but I also have that connectivity, so if I can't I know somebody who can, yes it's that particular bit as well. And I think, third, which is as important as the other two, is that inner satisfaction, that personal, yeah at the moment I may be talking a load of rubbish, but I know that I am adding something to the work that you're doing yeah. 
 

Nadeem has found it hard to get involved as a research participant. Now he’s interested in wider involvement and thinks his diversity training could be useful.

Nadeem has found it hard to get involved as a research participant. Now he’s interested in wider involvement and thinks his diversity training could be useful.

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Yeah I mean over the kind of the last six/seven years you know I've tried, not necessarily proactively by harassing people and saying, "By the way why you haven't replied?" But when, at the Council you get through the staff newsletter little snippets about X is looking for volunteers or Y is looking for volunteers as well. On a few occasions I've applied or I've replied to the email address. I got replies twice – once actually, because I don't think the information was that clear, so once actually I went to [hospital name], the hospital at [city], and the woman started asking me questions and all of a sudden she says, "No, no, no you're not the right sort of category or the classification of whatever they were looking for." But other than that nothing ‘til I attended this event organised by [name] University I think sort of through their aging partnership or whatever it's called, it's so long ago. And I thought, well now that I've got more time on my hand yeah and I can actually contribute one way or the other, if required, and if wanted, so I'm quite keen to get involved in research. 

One is for the betterment of the society in the future; the other one is because I have an equalities background from, since 1981/82. And, despite all the development which has taking place in the field of patients involvement and the field of communicating better with people from diverse communities, I think there are still barriers, yeah. And part of that is about how one can remove those barriers. And barriers are on both sides. One is about understanding and I'm one of them, yeah, and the other one is about how the health professionals respond to and deal with people from different backgrounds.
 

Nadeem prefers to be sent documents in hard copy by post.

Nadeem prefers to be sent documents in hard copy by post.

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My only request, I mean these days, you know when I was working it was slightly different, is that I've asked people to send me stuff in the post. They can send it to me email as well but I'm still the traditional old school you know, I like looking at paper and I like scribbling yeah. To me it's much easier that using a document and then putting my words in, you know, as opposed to going this, you know, track changes and whatever. I find those maybe I'm of a different age and I'm not the computer kids that you guys are these days but, you know, I still prefer having that hard material in front of you because you can flip back. On a PC, yes you've got the document yeah, but you can't flip back, you've got to scroll yeah. 

And do you think that using computers is important for people who do PPI work? Do you think that would be important?

I think it's a bit of both yeah. Yes I mean some people will find it easier you know. I mean attend our meetings where people have, don't carry any papers. They open their iPad or whatever, the document comes out and they read it. I still find it, I'm not sure, I'm still trying to work out whether it's being rude or not being interested yeah, and maybe that's my generation yeah. I would still enjoy the flicking of the pages yeah, I would still say, "Well actually on page 25, paragraph three, you said this because you can sort of cross reference it. I don't think you can do that on a computer yeah. But it takes all yeah. I've still, I mean I remember when I was working, I would still handwrite my letters, I would handwrite all my reports – it'll go to the admin, type it, correcting on a pc – not a problem.
 

It’s nice to get a bit of payment but it would never be Nadeem’s main reason for getting involved.

It’s nice to get a bit of payment but it would never be Nadeem’s main reason for getting involved.

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I mean if there are kind of sort of a little bit of financial reward I'd, yes you know I mean I want to work, I want to still make money to pay bills you know, so every little helps. But at the end of the day if I'm committed and I want to get involved in it. And if you get a little bit of reward through payments that's fine, but my motive is not financial yeah, and that's me yeah. There may be others saying, "Well I'm doing it because I'm getting ten quid an hour," as an example. I think being, volunteering for it and doing it off your own interest has that element of independence. Once you get paid for it yeah, then to some extent you're restricted yeah, but if you agree to do a little bit of work and there is a payment for it that's fine yeah, but to me it's not about money, yeah.
 

Nadeem would see himself as a representative who happens to come from an ethnic group, rather than ‘an ethnic representative’.

Nadeem would see himself as a representative who happens to come from an ethnic group, rather than ‘an ethnic representative’.

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But I think there needs to be a regular feeding in into that we need people from the community. We are living in a diverse community, yeah. There is an under representation, yeah, so you are not coming in as an ethnic representative, yeah, but you're coming in as a representative who happened to be from a minority group but you're contributing to the research. And the research is not to do with race or gender or ability or disability, you know. It's a piece of research yeah and we want your understanding. And I think that somewhere along the line that message needs to come out because otherwise the feeling is that anything to do with race – we'll come to that particular point. 

And the other example was, is also about school governors yeah. There's still this debate and argument about that there isn't enough, there aren't enough people from the minority communities on school governing board. Well the question really is do we need people from ethnic minorities to be on the board or do we need to have a representative group which actually reflects the community of our school and the community or the wider community in that particular area as well, yeah? I think the, unfortunately they have somehow that message comes out as that I am only being asked because I'm different. I'm not asked because I will bring something more and part of that more also is the little bit differences that I have. 
 

We need to work harder to raise awareness of public involvement and get a wide range of people involved in all research.

We need to work harder to raise awareness of public involvement and get a wide range of people involved in all research.

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But people out there don't know and it's not just from minority ethnic communities’ point of view, I think communities in general, they don't actually know, right, what is the public involvement in health and research yeah. So there needs to be some kind of, I don't want to use the word positive action, but I suppose there needs to be some kind of a work done at the grass root level by health professionals in those particular things – whether it's to do with the health liaison teams or health link workers or whatever they have or community nurses or whatever yeah. – is to encourage people to get involved but before they do that to say, "Well actually what are you getting involved in yeah?" I think what, I mean there was one piece of research that yeah I think, which was not work related was looking at the heart and diabetic, diabetes within the minority ethnic communities. And that was, and I took part I think what nineteen, eighteen/nineteen years ago yeah. And because of my work involvement because I was the Council's Race Relations Officer so I was involved in that particular thing as well. But a) that research was specific to one particular group. But in general my anecdotal evidences and experiences has been that there's a wider research and then some clever clog will say, "You have not addressed the ethnicity issue." OK so we will set up a working, oh sorry, we will set up a, what's the word, a focus group, right? Could you identify half a dozen or a dozen people from minority communities in that particular focus group? No, that's not the way, yeah. 

But I think there needs to be a regular feeding in into that we need people from the community. We are living in a diverse community, yeah. There is an under representation, yeah, so you are not coming in as an ethnic representative, yeah, but you're coming in as a representative who happened to be from a minority group but you're contributing to the research. And the research is not to do with race or gender or ability or disability, you know. It's a piece of research yeah and we want your understanding. And I think that somewhere along the line that message needs to come out because otherwise the feeling is that anything to do with race – we'll come to that particular point. 
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