- Email: [email protected]
Researching minority groups
Correspondence
We would like to echo the sentiment expressed by Richard Horton in his Comment about indigenous people (May 27, p 1705).1 After starting a “simple” patient satisfaction study in an out-of-hours primary care setting,2 we soon realised that we were failing spectacularly to capture even minimal data from the Irish Travellers who happen to be frequent users of this service. This was despite (or because of) the use of validated research tools (SQOC and SF-12)3,4 as well as starting what we naively hoped would be a successful intervention to capture data. This vulnerable minority group die substantially earlier and have lower literacy levels than the national average, and yet are often unknowingly excluded from studies owing to issues relating to trust and literacy. If equity is to be a core principle in health care, meaningful research data from this and other marginalised groups need to be collected, so that health services can be tailored accordingly. Moreover, by failing to address these issues effectively, we add to the “cultural fragility” of this ancient group of nomadic people. Discussion among attendees of the conference at which we presented our study on Irish Travellers validated its transferability to different ethnic groups in various settings worldwide. Consequently we are in no doubt as to the relevance and importance of such research. We applaud The Lancet for giving this theme centre stage and making it the focus of future issues. Furthermore, we implore all researchers to consider marginalised groups within prospective study populations before embarking on any research journey. We declare that we have no conflict of interest.
*Robert Scully, Liam Glynn [email protected] *Warwick Medical School, University of Warwick, Coventry CV4 7AL, UK (RS); and Department of General Practice, National University of Ireland, Galway, Ireland (LG)
www.thelancet.com Vol 368 August 12, 2006
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Horton R. Indigenous peoples: time to act now for equity and health. Lancet 2006; 367: 1705–07. Scully R, Glynn LG, Newell J, McKinley R, Murphy AW. The myth of researching minority groups: a case report. In 12th International Ottawa Conference on Clinical Competence; New York, NY, USA; May 20–24, 2006. Salisbury C, Burgess A, Lattimer V, et al. Developing a standard short questionnaire for the assessment of patient satisfaction with out-of-hours primary care. Fam Pract 2005; 22: 560–69. Ware JE, Kosinski M, Keller SD. SF-12: how to score the SF-12 physical and mental summary scales. Boston, MA: the Health Institute/New England Medical Center, 1995.
True Irish Roma descend from the approximately 3000 (mostly Romanian) Roma who have recently migrated to Ireland. Although ethnically distinct from Irish Travellers, they share many of the same health problems but have a group of distinct autosomal recessive genetic disorders.5 Irrespective of specific ethnic origin, the health needs of our nomadic populations remain a cause for serious concern.
We do not have the rights to reproduce this image on the web. Still Pictures
Researching minority groups
We declare that we have no conflict of interest.
*Andrew Green, Sally Ann Lynch
Health of the world’s Roma population We endorse Kent Sepkowitz’s conclusions about the poor health status of the world’s Roma (May 27, p 1707).1 However, we would like to clarify his comment on the Irish Roma. The study data he cites do not come from Irish Roma, but a separate population: the Irish Travellers.2 Irish Travellers are an indigenous minority of at least 30 000 people, documented as being part of Irish society for centuries. They are distinct from the Roma, but have similar traditions such as nomadism, extended family networks, and increased frequency of first cousin marriage. Additionally, Irish Travellers have increased health needs, with life expectancy between 10 and 12 years lower than that of the settled Irish population.3 A report from the west of Ireland4 noted that 28% of Irish Traveller parents had suffered the death of a child. Chronic childhood disorders were common: 2% of the children had Hurler’s syndrome, 2% had galactosaemia, 1% had autosomal recessive osteogenesis imperfecta, 3% had deafness, and 1% had early blindness. A further 5% had a “disability”. We have diagnosed five children in this region with Cohen’s syndrome—a rare autosomal recessive disorder. We believe that Cohen’s syndrome could account for a substantial proportion of the children classified as being disabled.
[email protected] National Centre for Medical Genetics, Our Lady’s Hospital for Sick Children, Crumlin, Dublin 12, Ireland 1 2 3
4
5
Sepkowitz KA. Health of the world’s Roma population. Lancet 2006; 367: 1707–08. Van Cleemput P. Health care needs of travellers. Arch Dis Child 2000; 82: 32–37. Barry J, Herity B, Solan J. The Traveller health status study: vital statistics of travelling people. Dubin: Irish Health Research Board, 1987. Callanan K, Evans D, Syron M. Health needs of Travellers. Galway: Western Health Board, 2002. O’Connell S, Butler K, McMenamin J, Waldron M, Green AJ. Genetic conditions in the Irish Roma gypsy population. Ir Med J 2005; 98: 246–47.
Kent Sepkowitz1 highlights the main conditions affecting the health status of the Roma population. However, there is no mention of HIV/AIDS risks among this group. Eastern Europe is experiencing one of the fastest-growing HIV/AIDS epidemics in the world. The epidemic mostly affects people who live in extreme poverty, those with poor living conditions and lack of education, and those vulnerable owing to prostitution. Drug use, trafficking, and migration also increase vulnerability. The Roma population is not exempt from these issues.2–4 In fact, in some countries, Roma are over-represented among injecting drug users,3 clients of sex workers, prisoners, and those whose partners are injecting drug users or clients of sex workers. As a consequence of aid dependency, violence, lack of education, and longterm unemployment, many Roma are further driven into high-risk behaviours. There is no hard evidence nor even any
For more information on Irish Travellers see http://paveepoint.ie
e-mail submissions to [email protected]
575
We would like to echo the sentiment expressed by Richard Horton in his Comment about indigenous people (May 27, p 1705).1 After starting a “simple” patient satisfaction study in an out-of-hours primary care setting,2 we soon realised that we were failing spectacularly to capture even minimal data from the Irish Travellers who happen to be frequent users of this service. This was despite (or because of) the use of validated research tools (SQOC and SF-12)3,4 as well as starting what we naively hoped would be a successful intervention to capture data. This vulnerable minority group die substantially earlier and have lower literacy levels than the national average, and yet are often unknowingly excluded from studies owing to issues relating to trust and literacy. If equity is to be a core principle in health care, meaningful research data from this and other marginalised groups need to be collected, so that health services can be tailored accordingly. Moreover, by failing to address these issues effectively, we add to the “cultural fragility” of this ancient group of nomadic people. Discussion among attendees of the conference at which we presented our study on Irish Travellers validated its transferability to different ethnic groups in various settings worldwide. Consequently we are in no doubt as to the relevance and importance of such research. We applaud The Lancet for giving this theme centre stage and making it the focus of future issues. Furthermore, we implore all researchers to consider marginalised groups within prospective study populations before embarking on any research journey. We declare that we have no conflict of interest.
*Robert Scully, Liam Glynn [email protected] *Warwick Medical School, University of Warwick, Coventry CV4 7AL, UK (RS); and Department of General Practice, National University of Ireland, Galway, Ireland (LG)
www.thelancet.com Vol 368 August 12, 2006
1
2
3
4
Horton R. Indigenous peoples: time to act now for equity and health. Lancet 2006; 367: 1705–07. Scully R, Glynn LG, Newell J, McKinley R, Murphy AW. The myth of researching minority groups: a case report. In 12th International Ottawa Conference on Clinical Competence; New York, NY, USA; May 20–24, 2006. Salisbury C, Burgess A, Lattimer V, et al. Developing a standard short questionnaire for the assessment of patient satisfaction with out-of-hours primary care. Fam Pract 2005; 22: 560–69. Ware JE, Kosinski M, Keller SD. SF-12: how to score the SF-12 physical and mental summary scales. Boston, MA: the Health Institute/New England Medical Center, 1995.
True Irish Roma descend from the approximately 3000 (mostly Romanian) Roma who have recently migrated to Ireland. Although ethnically distinct from Irish Travellers, they share many of the same health problems but have a group of distinct autosomal recessive genetic disorders.5 Irrespective of specific ethnic origin, the health needs of our nomadic populations remain a cause for serious concern.
We do not have the rights to reproduce this image on the web. Still Pictures
Researching minority groups
We declare that we have no conflict of interest.
*Andrew Green, Sally Ann Lynch
Health of the world’s Roma population We endorse Kent Sepkowitz’s conclusions about the poor health status of the world’s Roma (May 27, p 1707).1 However, we would like to clarify his comment on the Irish Roma. The study data he cites do not come from Irish Roma, but a separate population: the Irish Travellers.2 Irish Travellers are an indigenous minority of at least 30 000 people, documented as being part of Irish society for centuries. They are distinct from the Roma, but have similar traditions such as nomadism, extended family networks, and increased frequency of first cousin marriage. Additionally, Irish Travellers have increased health needs, with life expectancy between 10 and 12 years lower than that of the settled Irish population.3 A report from the west of Ireland4 noted that 28% of Irish Traveller parents had suffered the death of a child. Chronic childhood disorders were common: 2% of the children had Hurler’s syndrome, 2% had galactosaemia, 1% had autosomal recessive osteogenesis imperfecta, 3% had deafness, and 1% had early blindness. A further 5% had a “disability”. We have diagnosed five children in this region with Cohen’s syndrome—a rare autosomal recessive disorder. We believe that Cohen’s syndrome could account for a substantial proportion of the children classified as being disabled.
[email protected] National Centre for Medical Genetics, Our Lady’s Hospital for Sick Children, Crumlin, Dublin 12, Ireland 1 2 3
4
5
Sepkowitz KA. Health of the world’s Roma population. Lancet 2006; 367: 1707–08. Van Cleemput P. Health care needs of travellers. Arch Dis Child 2000; 82: 32–37. Barry J, Herity B, Solan J. The Traveller health status study: vital statistics of travelling people. Dubin: Irish Health Research Board, 1987. Callanan K, Evans D, Syron M. Health needs of Travellers. Galway: Western Health Board, 2002. O’Connell S, Butler K, McMenamin J, Waldron M, Green AJ. Genetic conditions in the Irish Roma gypsy population. Ir Med J 2005; 98: 246–47.
Kent Sepkowitz1 highlights the main conditions affecting the health status of the Roma population. However, there is no mention of HIV/AIDS risks among this group. Eastern Europe is experiencing one of the fastest-growing HIV/AIDS epidemics in the world. The epidemic mostly affects people who live in extreme poverty, those with poor living conditions and lack of education, and those vulnerable owing to prostitution. Drug use, trafficking, and migration also increase vulnerability. The Roma population is not exempt from these issues.2–4 In fact, in some countries, Roma are over-represented among injecting drug users,3 clients of sex workers, prisoners, and those whose partners are injecting drug users or clients of sex workers. As a consequence of aid dependency, violence, lack of education, and longterm unemployment, many Roma are further driven into high-risk behaviours. There is no hard evidence nor even any
For more information on Irish Travellers see http://paveepoint.ie
e-mail submissions to [email protected]
575