US and UK researchers.

A database of principal investigators of recent (2001–2006) asthma projects was compiled through conducting Medline searches, searching the databases of the US NIH and UK National Research Register, Asthma UK, and the Cochrane Airways Group, and contacts with experts. Purposeful sampling was employed to identify researchers from a wide range of disciplinary backgrounds (i.e., genetics, basic sciences, epidemiology, statistics, primary and secondary care, and quantitative and qualitative research), and likely expertise in and experiences of recruiting minority ethnic people into research. We constructed a sampling matrix and began by recruiting broadly across these potentially relevant data fields and then sampling to fill in any important gaps; subsequent sampling was then guided by the emerging findings.

UK community leaders.

We purposefully recruited South Asian “community leaders” ensuring that we had males and females, those from key relevant ethnic (i.e., Indian, Pakistani, and Bangladeshi) and faith (i.e., Hindu, Muslim, and Sikh) backgrounds, and those occupying formal and informal national and more local UK leadership roles. Ethnic and faith identity were self-described by participants. Study information materials were translated into the main relevant languages (i.e., Hindi, Urdu, Gurmukhi, Gujarati, and Bengali).

Interview data.

Key issues to emerge from these interviews that can help to explain the differences in recruitment rates between the UK and US include: the importance assigned by researchers to the issue of recruiting minority ethnic people; stereotypes and prejudices; different political contexts; and, above all, the impact of the NIH's policy in the US [11]. We consider each of these subject areas in turn.

Attitudes of UK and US researchers towards inclusion and policy considerations.

The interviews with UK researchers revealed a wide range of opinions on the subject of minority ethnic recruitment. The views can broadly be divided into three categories: (i) a minority who did not see targeted inclusion of ethnic minorities as having any scientific value except, possibly, in some very specific contexts; (ii) those articulating views that were in general supportive of broader inclusion for most studies (with several exceptions), but with concerns about the practicality of recruiting subjects, viewing the imposition of targets as impractical and even counter-productive; and (iii) those who were committed to a policy of inclusion similar to that introduced by the NIH. The majority of UK researchers tended to fall into the second category, whereas the majority of US researchers tended to fall into the third category.

Some UK researchers displayed a degree of antipathy towards NIH-type targets for inclusion that were perceived to be introduced for political rather than scientific reasons, describing this as “politicians responding to the political correctness brigade” (AR05). Another researcher also expressed concern about the NIH targets, commenting “I think it is probably pandering to political correctness” (AR23); after a discussion on the pros and cons of mandatory targets, the researcher concluded, “…so I think I would not be in favour of …funder led guidelines.” The following parody, introduced in a discussion on the relative merits of positive discrimination, reflects some of the concerns that were expressed: “So I've got two to go, I need one fat white bald smoker and I need one thin young Asian woman, non-smoker … maybe we should be recruiting more people with multi-pathologies. I bet we don't have enough hypertensives in our asthma studies” (AR13). This researcher went on to emphasise that the issue was: “Not just about ethnic minorities!”. Such views were barriers to more inclusive recruitment practices and one researcher suggested that “it has to be a societal change and most of these changes cannot come by enforcing it, it comes by people wanting to change it” (AR39). The practices of a number of UK researchers pointed towards lack of commitment, interest, or will. For most researchers, “the issue hasn't been given much thought” (AR24). As one researcher said, “not recruiting minorities is sort of left over from having a very cohesive mono-culture” (AR29).

In contrast, US researchers were, on the whole, more positive about the importance of recruiting minority ethnic people on scientific grounds than their UK counterparts as reflected, for example, in the views of this researcher: “I think there is now a strong likelihood that we will discover important differences and for that reason I think it is important to try to push [for inclusion of minority ethnic people]” (AR41).

Stereotypes and prejudices.

Our study also found evidence that some UK researchers' perceptions of, and attitudes towards, ethnic minorities may have played a role in influencing recruitment decisions, some of which are considered below.

Reflecting on some of the barriers to participation in studies or engaging with research, one researcher drew on his own experiences of caring for large numbers of South Asians in his practice; “First generation migrants direct from the Indian sub-continent tend not to have the skills …to deal with and process information in a digestible form” (AR14). Earlier on in the interview, this researcher had however pointed to the differences in trying to engage with more established subgroupings within the South Asian population, this in turn reflecting their integration within society as a whole: “Their [Indian] children move fast, because when they came to England. Most of them got jobs, they like the Bengalis they have a big sense of family, but unlike the Bengalis they do their best to ensure that their children will have a good education and go to university and get a good job. Whereas the Bengalis don't really give a s***!”

One researcher, in the context of a discussion contrasting Western European philosophies and society with Eastern self-interested societies, presented ethnic minorities as lacking altruism saying: “They are more orientated towards their family and less towards society as a whole, or possibly, which is even worse, that they are only willing to contribute to the society where they come from…” (AR15). He went onto describe South Asian people as “…a little bit selfish,” this reflecting, more generally, their perceived relative lack of engagement in society.

There was also a feeling among some researchers that ethnic minorities may not comply with instructions and that they are unreliable, which was raised in the context of a discussion on illegal immigration and the use of pseudo-names: “When you have people who are unreliable for whatever reason, they should be excluded and that's not a racial thing, it is just a judgement on reliability” (AR05).

In contrast, the attitude of most US researchers is reflected in the views of these researchers:

“We have to accept that these people [ethnic minorities] are part of the population and that means respect and it means learning to live with diversity and pluralism” (AR35).

“And I think the other thing is, and again this sounds very simple, I think it's just, you know, as you would treat anybody, you treat them with considerable dignity…And I think that becomes very, very important and you recognise their special needs…Very, very important. And you try to be obliging without being overbearing” (AR27).

The numerous challenges associated with recruiting ethnic minorities led several UK and US researchers, irrespective of their personal commitment to the idea, to view it as a major “hassle” with considerable implications in relation to “time, effort and resource” (AR05). There was, in general, also considerably more optimism from US researchers when compared to UK researchers regarding their ability to engage with minority communities, which seemed to be a reflection of both greater commitment and the confidence resulting from previous successful engagements. Several researchers thus noted that the logistical barriers were not insurmountable, their experiences indicating that ethnic minorities do participate if appropriately approached. As one US researcher noted:

“We may, we'll make up to 50, 60 telephone calls trying to get somebody. I mean, this is extremely labor intensive. We will, if we get set someone enrolled and we need to collect data and they can't do it by telephone, we send someone to their house. We take it very, very seriously…it's not just a matter of ringing someone up once or twice and if it doesn't work calling it a day. You know, you have to be ready, and this costs money…” (AR02).

This view of increased costs associated with recruiting minority ethnic people was, although widespread, not universally shared by US researchers. One researcher, for example, who was committed to the importance of inclusiveness in research, when asked about increased costs associated with recruiting minority ethnic people, retorted: “I don't believe any of that!” (AR38).

Finally, US researchers frequently expressed concern at the possibility of excluding minority ethnic people, as for example, reflected by this researcher: “You know, most – I find it hard to… I find it hard to accept there are researchers who will not work with an Asian population or an ethnic diverse population or however you want to group them” (AR35).

Demographic, political, and socioeconomic contexts of the two countries.

Both US and UK researchers either pointed out or accepted the fact that the demographic profile of ethnic minorities, their histories, political engagement, influence, and the way the health services are configured in the two countries also contribute to differential recruitment rates in the two countries. For example, one participant said: “the Tuskegee study is still a legacy that sticks with our community in terms of research particularly when a lot of our researchers are White” (AR37) [23],[24].

The US population is largely served by the private health sector through insurance. As minorities are less likely to be insured, participating in an asthma study potentially has the added advantage of receiving free medical attention making it more attractive for minorities in the US to participate in research:

“Most of our people living in the inner city have you know, government supported insurance….So that helps that it means they'll get their drugs covered, you don't charge for visits, you know, that's [part of the study and in some of the studies we actually provide them with medication so they don't actually have to go to the pharmacy and deal with the hassle”(AR27).

Such incentives in some instances do not motivate interest in participating in studies: “…a lot of times we have difficulty getting White patients because they don't need the medication. Why would they take two hours out of their day to drop downtown and do this research study?” (AR37).

NIH policy and its impact on attitudes and experiences in the US contrasted with the UK.

Our data suggest that the introduction of the NIH policy had a major impact on the attitudes and experiences of US researchers and probably explains much of the differences in perspectives and experiences noted above. Salient features of the NIH policy are summarised in Box 1 [11].

We found that most US asthma researchers currently accept the stipulation of the NIH policy and had as a consequence devised creative strategies to address the challenge of recruiting marginalised groups including, for example, community leaders being “hired as study personnel” so that they in effect became study employees, thereby making it “legitimate to pay them” and cooperating with other research teams “so, when a racial or ethnic difference seems to be important, we co-operate with another area that has subjects we can recruit” (AR29). There was an expressed greater willingness to work with people “in their own territory,” including going into “their own homes or in a community centre” or hosting free “community events” such as “barbecues” (AR35) or setting up study clinics in accessible places such as “in a suburban shopping mall or some place that's right next to the bus stop or tube stop or…they can just walk right in. Or they can just drive right up and walk right in to see you” (AR38).

There were also instances in which the NIH took a more proactive role:

“I'm thinking of our first study where we really were working in a school and kind of recruiting what you would call difficult populations. We were lucky because it was a contract from NIH where there were several people that were contracted to do the same type of work and NIH got us together on a regular basis and I think we were able to help each other” (AR37).

The strategies adopted were typically resource and time intensive as well as diverse as researchers tailored their approaches to take into account both the nature of the study they were conducting and the social context within which they were working.

Though only NIH funded studies are required to recruit and report on ethnicity, the policy appears to have had a wider impact beyond NIH funded studies. “It's pretty much an expectation so I think it really does filter down if you, … have a similar organization that's well respected I think people start to look at that [NIH policy] as really the gold standard” (AR37). Thus although pharmaceutical companies are not bound by quotas they are answerable to the Food and Drug Administration (FDA), which requires “…evidence that the drug's not acting differently in one group than another” (AR29).

There was resentment in the US when NIH policy was first introduced as it was seen as a political move. “I think it was entirely political…” (AR41). “They [researchers] hated it … and they wrote every excuse in the book of why they shouldn't have to do it” (AR12). “It was clearly difficult for us in the beginning” (AR41). However, with new evidence emerging, there seems to be more conviction in the US. “It's hard to argue that having a reasonable amount of demographic diversity isn't scientifically revealing. I think now there is a strong likelihood that we will discover important differences and for that reason I think it's important to try to push even if it's a political argument for pushing” (AR41).

A few researchers felt that it would be better if they did not have to pursue targets for certain studies. Nevertheless, not a single US researcher questioned the benefits of minority inclusion or called for it to be eliminated. In spite of the apparent commitment, it was felt by some that “they'd go right back” (AR12) if the NIH no longer insisted on the need for recruitment of minority people.

The overall importance and impact of the NIH policy was well summarised in the following words:

“All of us who are working with NIH grants, we have to indicate the percentage of minority people that will be involved in our grants and we have to report on a quarterly basis how we are doing on recruitment. And if we're not doing well on recruitment we hear from our programme officer and one can lose a grant if recruitment isn't as it needs to be and this is because NIH had a lot of difficulty in years past with giving grants and at the end people would say, well you know what, we just couldn't recruit the people and so NIH said well we don't think it's a good investment of our money…” (AR02).

Unlike the US, there is no comparable policy existing in the UK. Most UK researchers did not believe that existing laws and guidelines required them to include ethnic minorities in their study though some did express the view that the Race Relations Amendment Act [25] and the Human Rights Act [26] clearly puts the onus on researchers to ensure that their study sample is representative of the population under study and that no group is excluded from the benefits of research.

UK researchers did not specifically target or monitor ethnic minorities unless the study question specifically required them to do so. Most researchers “just simply advertise” (AR20) and “recruit people regardless of their ethnicity as they come through the clinics”(AR24) and have not “particularly monitored the ethnic minorities within the group … [they] used” (AR07). “As long as you capture the data that's fine, but to deliberately go out and say, ‘I must recruit X number of Asian …’ just doesn't make sense” (AR05).

The standard response, even from those who whole-heartedly supported the idea of inclusion, was that this consciousness was not translated into action in terms of research strategies. “We never put positive discrimination … you know we haven't done historically … you get people who come” (AR17).

Questionnaire data.

Supplementary questionnaires (see Text S3) were completed by 26 researchers (72% overall: 74% UK and 71% US). The findings were in close agreement with those elicited through interviews but did offer a few additional insights into the barriers facing researchers in recruiting minority populations and the observation that UK researchers perceived that this subject was a relatively unimportant issue for funders and journals. The majority of UK researchers in support of this position and who thought this issue was important for journals and funders were themselves from social science backgrounds and/or from minority ethnic groups, whereas researchers in general in the US considered this to be a particularly important issue for funding bodies. None of the respondents expressed a wish to post anonymised comments onto a Web site.

Lack of awareness of research and opportunities to participate.

A number of the community leaders had little experience of being asked to help recruit participants or, for that matter, personally being invited to participate in research, whether in the context of asthma or indeed any other research.

“Well first of all I think the most important thing is the media. It should be put through the media because people must know what is asthma. The Asian community and where they can go and how they can come forward if there's any research going on. Nobody knows about it. I don't know anything about it. Personally I don't know anything about it unless somebody approached me and talked to me to tell me what it is, then I would know it” (CL03).

This lack of engagement with research appeared to be widespread, often resulting in the lack of any broader opportunities to learn informally through friends and family members, for example about research participation and what it might entail.

I: Have you ever been approached for any health research projects?

CL02: No.

I: Never?

CL02: No.

I: …Do you know of anyone who's ever participated in health research?

CL02: No, not that I know of, no. (CL02)

Those who had some connection with the medical profession, either themselves being doctors or working with medical colleagues or through their respective organisations, were in contrast more likely to have been approached to help recruit participants, although such approaches tended to be relatively infrequent. Given the relatively high proportion of South Asian doctors in the UK, drawing on the support of such individuals could prove very useful, although there is the associated risk of possible gatekeeper fatigue (discussed below).

Recognition of the importance of this field and a willingness to engage if invited to do so.

There was widely held and strongly expressed support for the involvement of minority ethnic communities in research, which was argued for on the grounds of fairness and justice, the need to reduce the high and disproportionate levels of morbidity, and, more generally, in order to better understand the changing nature of minority ethnic communities. Responding to a question on the appropriateness or otherwise of this enquiry, one leader, for example, commented that such studies were: “Oh absolutely essential. I think one of the problems is that we don't know enough formalised studies. We don't know enough about people generally, you know, what they think, how they're perceived and so forth…” (CL04).

There was amongst some leaders, although certainly not all, a detailed appreciation of discrimination and equality legislation, which they were able to draw on to inform their responses in the context of discussions on research. Reference was in this respect made to, amongst other considerations, “the Race Equality Scheme” and the “Commission for Equality and Human Rights” (CL11), which were mentioned to underscore the importance of fairness for all members of society [25],[26].

A sense of responsibility towards community members also served as an important motivating factor:

“But there is a lot of ways we can help you. We will do our best to assist you in whatever way we can. We are here to see our community benefit. Doesn't matter whether it's Pakistani, Indian, Bengali. We work with every one of them. So we will try and help as much as possible from this office. So our doors are open to you at any time” (CL03).

Perhaps, ever more telling, was that a number of the community leaders interviewed went out of their way to help recruit people with asthma and carers for the focus group component of this work.

Recognising the need to ensure cultural sensitivity and opportunity costs.

There were a number of suggestions made on how recruitment might best be encouraged centring on the need to ensure that the language needs of minority ethnic communities were adequately met and that cultural and religious and cultural values, such as the need for gender segregation, were respected:

“Particularly, if you're handling the women, you have to be very careful. You know that, in Islam, there are certain things that the women don't like. They'd rather they be handled by a female doctor, rather than handled by a male doctor” (CL03).

The need to think about convenience, recognising that people had busy lives, was also emphasised particularly as many are disadvantaged and hence would find it difficult to meet transportation costs, for example. Interviewees also reflected on the lack of capacity that their respective organisations had to facilitate such additional noncore work and that if they did engage with such requests this would have opportunity costs.

“Many mosques and centres don't have that capacity because of the constraint in financial sources…they don't have enough people…we are encouraging our mosques and centres to work with the local community, local council, local service providers like hospitals and others and it's gradually getting through, but there has to be reciprocal attempt from the service provider” (CL05).

Finding “a carrot” of some sort for the organisation was suggested as potentially important in helping to address such barriers; the community organisations' needs in this respect tended to be relatively modest such as “hall hire…for a Sunday afternoon” or paying for “a dinner” (CL06). Although these suggestions were in keeping with the types of activities already being undertaken by many US researchers, such initiatives would require new ways of working by UK academics and funding bodies, as such activities have funding implications that are typically not budgeted for in research applications.

One of the leaders who had the most experience of facilitating research in the past was, while retaining appreciation of the importance of the subject, very negative about many of her own organisation's experiences as the approaches were often seen as “tokenistic” or “last gasp” attempts when other approaches had failed. This then led her to question her personal involvement: “You know after years and years of taking part and then thinking ‘Well you know what does happen with all that stuff?’ Nobody ever gets back to us about it…So since then I have been very cynical and very careful and I ask a lot of questions and I would want to know what it is that we are going to get out of this” (CL13).