chapter  4
17 Pages

Engaging communities and users: Health and social care research with ethnic minority communities

ByMARK R . D . JOHNSON

Central to the usefulness of research is the question of validity. Much attention may be paid, especially in health-related research, to questions of research quality assurance and the allocation of any research and guidance to a point on the accepted hierarchy. This is frequently achieved by the application of standards such as those delineated in the Cochrane (and now, Campbell) Collaborations and used to assess the entry of evidence into ‘systematic reviews’ (see also the guidance from the York Centre for Reviews and Dissemination: ‘Undertaking Systematic Reviews of Research on Effectiveness’ http://www.york.ac.uk/inst/crd/report4.htm). This approach has been particularly evident in relation to ‘quantitative’ research which measures or counts things and people – and their actions. Quality criteria here usually relate to the size of the sample, the accuracy of measurement, and sometimes the validation of the measurement instrument, be it a blood-pressure meter or a questionnaire. There are, however, few ‘standardised’ psychometric or quality-of-life (patient reported outcome) measures that have been validated for use with ethnic minority groups (Bhui et al. 2003). Another debate centres about the ‘authenticity’ of knowledge, which is more notable in the field of ‘qualitative’ research, but revolves around the same concepts of accuracy, applicability and measurement or understanding of reality. There are well-regarded systems for the assessment of research quality in the fields of qualitative research (Murphy et al. 1998). In both traditions, a critical issue is the question of accessing and selecting a legitimate, representative ‘sample’ of a population to inform the research. These points are universally important to social science, and other forms of research, but they fail to address the specific and central question asked in this volume. That is, what are the issues in conducting research in a society of diversity where a common set of values and ideas cannot be assumed, and the population is segmented along lines of ‘race’, culture or ethnicity. All research is only an approximation to the ‘real world’ (assuming that such an ideal exists), and all scientific research seeks to avoid systematic bias. Should the perceptions and values of a significant minority of the population be omitted, however, through what we may loosely term ‘cultural discrimination’, then that bias becomes inbuilt to the research, and its conclusions fatally flawed. That is to say, if a specific sub-group or ‘type’ of population is excluded (and this is not recognised and reported on), then the findings and conclusions of the study are flawed or biased. Some of these issues

However, from the outset it must be noted that from the perspective of minority populations there may be both ‘too much’ research – insofar as their particular (‘peculiar’) specific characteristics may attract research attention that is unwelcome or serves to stigmatise their community – or ‘too little’, insofar as they may be excluded from research that has measurable benefits or informs policy and practice shaping the provision of services they want or need. Following ‘urban disturbances’ in Britain in the 1970s and 1980s, ethnic minority groups felt that they were the focus of much research into their grievances, and the ‘causes of riots’, with little or no payoff for them, and seldom any sense of ownership of the results (Singh and Johnson 1998). Similarly, it has been observed that the discovery of genetic influences on health since the 1960s has ‘turned the Pacific into a laboratory for exotic researchers’ (Pearce et al. 2004), a comment that echoes Bhopal’s comment over ten years ago that research had not yet delivered any ‘health dividend’ to ethnic minority groups in Britain (Bhopal 1990). The conclusion that ‘there must be a strong community base for health research that is of community relevance, with a sustained community involvement in research planning and implementation’ (Pearce et al. 2004: 1072) is hard to argue against, and one that finds resonances across minority and excluded communities everywhere.