Nadeem
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.
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.
More about me...
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.
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.
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.
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.
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’.
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.
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.