Patient and public involvement in research

Representing a range of views and experiences: diversity

A key debate in patient involvement is how far people who get involved represent others. There are two main elements to this debate: one is about the diversity of the people who get involved, which is dealt with here, and the other is about how far we can or should expect any individual who gets involved to be ‘representative’ of other patients’ or carers’ views.

Diversity

There was agreement that getting a more diverse range of people involved was important. The profile of people who get involved tends to be white, middle class, retired people, quite often with some form of health or research background. Having time to get involved, but also a certain level of education and confidence to engage with high-powered scientists, may make involvement easier for such people.

Although Francesco, Peter and Andrew suggested more men needed to get involved, gender balance did not seem to be a major concern for most people we talked to. However, people identified many groups who are less likely to get involved. These included young people and people of working age; people from minority ethnic communities; different faith groups and communities; people of different sexualities; travellers; single parents; people with disabilities; those who have not had a university education; unemployed people and others living on benefits. Practical barriers (such as lack of time, caring responsibilities and costs are part of the problem, but also issues of power and discrimination towards marginalised or excluded groups.

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

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Age at interview: 57

Sex: Male

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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.

It’s fine to involve white, retired, middle class and educated people, but they have a duty to say it’s wrong if they’re the only people involved.

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Age at interview: 62

Sex: Male

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It doesn't take a lot to notice that I am white and of a certain age. It's a wee bit more difficult sometimes to realise that I am educated, but only to a certain level, and that I am probably fit into that latest survey of middle class, right? And that, you know, I am retired because I'm a certain age and I can't prevent any of those things, that's just me. And there's nothing wrong in me being involved because what we bring is a particular perspective. But, you know, if I look round the room and it's just more ‘me's’ because there might be some woman there as well because we owe a debt, because without the woman I don't think we would be here, because it was the woman's voice, certainly in cancer and in childbirth, that really were the drivers. But, if it's just white middle class people, we owe ourselves a real responsibility to say, this is wrong." And it's wrong on two levels: it's wrong if we are just the only people whose voices are there, and it's wrong if all we're doing is being that voice.

Engage people from lower socio-economic groups by working with people who are already engaging them.

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Age at interview: 54

Sex: Male

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But I do think, along with research in general, there is a difficulty with PPI in attracting certain cultural groups and certain socio-economic backgrounds. But I think that's also reflected in participation in clinical trials as patients and it's probably also reflected in general awareness about health research. As a social housing manager, which is what I used to be in my day job, these are hard to reach groups anyway for all sorts of things that you might want them to benefit from. They are hard to reach. No sorry I'll correct that – they're not hard to reach, they are hard to hear. There is a difference. We know where they live, we know the hospitals they go to, they're just hard to engage.

And have you any thoughts about how we could possibly engage seldom heard people in PPI?

I have often felt that the best way to find the hard to engage groups, is to go to the people who are already engaging them. So I tend to fall back on my professional background in social housing and the one obvious thing to me is to go to those social housing landlords, who specialise in housing particular ethnic groups, for example. If they are a social housing landlord, you are probably, not necessarily but probably, dealing with people from lower socio-economic backgrounds; people who don't necessarily have full education or qualifications, and you're also dealing with an organisation that has a relationship with these people – they house them, they collect the rent, they do their repairs, they know where they live. So to a certain extent, one would hope they are already engaged, and I think that's the way forward. There are other people, too, whether or not you can go to an organisation, like Joseph Rowntree, for example, who do the social research, and actually ask, "Can we do something broader?"

Helen describes sitting on a hospital board and the unequal power relations she sees. It’s hard to persuade the system to be more actively inclusive.

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Age at interview: 41

Sex: Female

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It's a very, very interesting topic. I mean, I am - for my sins - also a governor at the hospital where I became a member. And you know, I'm into the third year of my term there as a governor. Every single one of the governors is white, probably middle class, mostly either: retired, or happen to have enough income that they don't need to work, or don't work through ill-health. They are not the normal run of the mill people. Myself and a friend of mine actually joined at the same time and we don't get on very well with rest of the governors. Because we're a little bit, sort of, loud and you know, probably about thirty years younger than most of them. And I've had periods of unemployment, which is a real shock. I mean ‘how can you be unemployed?’ ‘We can't have an unemployed person being a governor, it just lets down the tone’. I mean it's - ooh it's so annoying! But, I don't think that there has ever been a single ethnic minority person on the governing body.

I'm not entirely - I mean, obviously it's not something that we will discuss and I choose ethnicity because it is reasonably apparent - the more ethnicity you are. But, I don't think that we necessarily have any people from different sexual orientations, I don't know. [I] don't know how, sort of, disabled status anybody is. Or, we have some people who have said that they have particular conditions but, there's been no concession in terms of handing out braille or hearing loop versions of meetings or minutes, or anything else like that. So there is an assumption that you are going to be white, middle class, probably middle aged to retirement age, independently wealthy, of a certain level of education, of a certain familiarity and comfortableness with seriously formal meetings where you say "Yes Chair, I would like to." And I mean, I sit there in the meetings - and I am not used to having to raise my hand and address the Chair to ask a question of somebody who has just also raised their hand and made a point. I mean it's not a comfortable atmosphere and I can imagine that if I was a, I don't know, a seventeen year old young black man from one of the estates on the edge of the town - where we all know that there are seriously awful people living. If I was on those coming into that environment I would feel seriously uncomfortable. And I have wanted to do something to change this but, have actually - there is so much inertia in the system that it is bigger than, it's a bigger job to make this more inclusive than one person can manage.

How you reach those communities? I don't know, I really don't know. I don't actually - I think one of the problems is that they don't even appear, certainly in the governing body; they don't even appear to be communities that they feel that they need to get in touch with. And I think that is one of the problems, is that initial desire to be in touch. If you have a desire to be in touch with as wider possible representative group of communities within - I mean, you want people to represent your community, and if you have that desire you will find a way. If that desire isn't there, then you're quite happy with whoever turns up.

Like Nadeem, Richard argued there was a risk of getting too focused on diversity for its own sake and how to involve people from specific groups, rather than how to improve the research: ‘And that's fine, and it's very important, especially when you're looking at ways of involving groups who aren't involved already. But ultimately, you involve patients in research to improve the quality of the research and to make that research benefit patients. And I do think there is a danger sometimes that the PPI industry gets lost.’ Margaret commented 'cancer is a great leveller and that differences between you and other people that might have seemed important before suddenly don't seem as important as your common shared experience of illness'.

Janice, Rosie and Carolyn pointed out that if our aim is to improve the design and relevance of research, we need to hear the perspectives of people whose health might be the subject of the research but who are less likely to volunteer. Several people commented that they preferred a term like ‘seldom heard’ rather than ‘hard to reach’, because it placed the responsibility on researchers to go out and listen rather than expect people to come to them. At the same time, felt that people have to want to be involved and you cannot force them.

It’s precisely the people who aren’t interested in research that we need to hear from, but that’s not easy.

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Age at interview: 66

Sex: Female

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What are the kinds of things that you think demonstrate good use of PPI in planning a research study?

Well very early on – I think that's, that’s the absolute first thing. So, even in terms of, you know, before you really narrow down your aims and objectives you may have a broad, you know, an idea of the broad area that you're going to look at. So, very early on, and, I suppose, being able to use a range of people as a sounding board. I think sometimes there's a sort of default position to go to the usual suspects. So, obviously I see a lot of diabetes research because of the work I do for Research for Patient Benefit. And it's very refreshing when they don't just go to Diabetes UK. Because one of the things about the whole plethora of groups out there is that they do have their own agendas, and they do have their own perspectives embedded in them. And also the people who are involved are a certain sort of person who is interested in their diabetes and wants to control it. And so often the problem is, it's the people who aren't interested and don't want to control it, or haven't engaged with it – that's a fairer thing to say. And you need to find out a little bit more about why they don't. And it's hard to find out why you're not interested or why you're not engaging from people who are interested and are engaging.

Rosie describes how getting someone from the traveller community involved in a specific project made it more likely to appeal to other travellers.

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Age at interview: 55

Sex: Female

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I mean many people, so in this area many of the people who are involved are white, middle aged, middle class, well educated, older – retired or you know.

Now I think those people, we, you know, I guess I'm one of them, we bring something, you know we have a voice but that we're not a very diverse, you know, it's not a very diverse group of people. Now in some situations that may matter less but if you were doing a research… so one of my, the projects at [name of charity] , we were looking at access to mental health services for people who get labelled as being hard to engage and one of the targeted populations which exist is travellers, I mean, you know, we got gypsies and travellers on to our; a gypsy and traveller onto our advisory group and we completely changed the way that the, with her advice, how we went about recruiting people. Because the way we were planning to recruit we'd have never recruited any gypsies and travellers and we had to go out to sites and with this member of the community who knew people who would then introduce us to people and then they'd talk to us you know. So we had to do something completely different. Well, you know, if, so, you know, if your research is trying to do something about access to services or, you know, people's different needs or diversity of needs, you know, you've got to make an effort to not just get the usual suspects like me.

We need to find people who are less likely to get involved, but it’s important to treat them equally and not like they’re ‘special cases’.

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Age at interview: 41

Sex: Female

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I mean, we need to be talking about who we want to include in our community, which is everybody who lives in our community. And it's not 'ism' or 'ist' in order to talk, to go out and find people who have specific requirements and needs, to find out what they are and how they can be accommodated. But I'm just - I find it difficult because, a lot of people talk about this issue but, I'm not entirely sure that a lot of people do anything about this issue. I'm not in - I don't know why but, I don't whether there is a huge desire to do the amount of work that it needs in order to do this. Because, it does take time and effort, and it is difficult, and [needs] a lot of people. I mean, the other issue is that, of course, if you rock up to a small, I don't know, black and ethnic minority group and say, "We want to talk to your members about" they'd turn around and say "Well don't treat just us like an ethnic minority, I mean don't treat us as special cases, we are part of your community, you shouldn't be sort of coming round with your big highfaluting ideas and treat us as some kind of research subject."

Derek and Dave A pointed out that in the early days of patient involvement there were very few volunteers, who seemed to be trying to do everything. Looking back it seemed to them that there was now a much broader range of people being included, but there was still room for improvement.

Last reviewed July 2017.