scholarly journals “Data makes the story come to life.” Understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers: a qualitative study

2021 ◽  
Author(s):  
Edward S. Dove ◽  
Ruby Reed-Berendt ◽  
Manish Pareek
Keyword(s):  
Public Health ◽  
Big Data ◽  
Ethnic Minority ◽  
Health Research ◽  
Healthcare Workers ◽  
Minority Groups ◽  
Significant Implication ◽  
Structured Interviews ◽  
Increased Risk ◽  
The Uk

The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the UK from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from Work Package 3, the ethico-legal stream, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and information governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were manually coded using qualitative thematic analysis. Participants told us that a significant implication across all stages of Big Data research in public health are drivers of mistrust – of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach can help assure 1) that meaningful engagement is taking place and that extant challenges are addressed, and 2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied.

scholarly journals ‘It’s possibly made us feel a little more alienated’: How people from ethnic minority communities conceptualise COVID-19 and its influence on engagement with testing

2022 ◽  
pp. 135581962110549
Author(s):  
Tushna Vandrevala ◽  
Lailah Alidu ◽  
Jane Hendy ◽  
Shuja Shafi ◽  
Aftab Ala
Keyword(s):  
Ethnic Minority ◽  
South Asian ◽  
Minority Groups ◽  
Cultural Beliefs ◽  
Ethnic Minority Groups ◽  
Structured Interviews ◽  
Asian Ethnicity ◽  
Black African ◽  
South Asian Ethnicity ◽  
The Uk

Objectives The cultural beliefs, practices and experiences of ethnic minority groups, alongside structural inequalities and the political economy play a critical, but overlooked role in health promotion. This study aimed to understand how ethnic minority groups in the United Kingdom conceptualised COVID-19 and how this influenced engagement in testing. Method Black (African and Caribbean) and South Asian (Indian, Pakistani and Bangladeshi) community members were purposefully recruited from across the UK. Fifty-seven semi-structured interviews were conducted and analysed using principles of grounded theory. Results We found that people of Black and South Asian ethnicity conceptualised COVID-19 as a disease that makes them visible to others outside their community and was seen as having more severe risk and suffering worse consequences, resulting in fear, stigmatisation and alienation. Views about COVID-19 were embedded in cultural beliefs, relating to culturally specific ideas around disease, such as ill-health being God’s will. Challenges brought about by the pandemic were conceptualised as one of many struggles, with the saliency of the virus contextualised against life experiences. These themes and others influenced engagement with COVID-19 testing. Testing was less about accessing timely and effective treatment for themselves and more about acting to protect the family and community. Testing symbolised a loss of income, anxiety and isolation, accentuated by issues of mistrust of the system and not being valued, or being treated unfairly. Conclusion Health communications should focus on counterbalancing the mistrust, alienation and stigmatisation that act as barriers to testing, with trust built using local credible sources.

scholarly journals Migrant mothers' experiences of perinatal mental ill health in the UK and their expectations of healthcare

2021 ◽  
Vol 9 (1) ◽  
pp. 32-38
Author(s):  
Ranjana Das ◽  
Daniel Beszlag
Keyword(s):  
Mental Health ◽  
Ethnic Minority ◽  
Social Services ◽  
Health Professionals ◽  
Minority Groups ◽  
Maternal Mental Health ◽  
Large Body ◽  
Structured Interviews ◽  
Mental Health Difficulties ◽  
The Uk

A large body of research has found that mothers from ethnic minority groups are at high risk of maternal mental health difficulties. This article presents a study of women from ethnic minority and migrant groups in the UK who experienced mental health difficulties in order to investigate obstacles they met in communicating their challenges with health professionals. Thirty qualitative, semi-structured interviews were conducted and analysed. The findings show that mental health is often a taboo in ethnic minority communities, and that a lack of stimulus and ability to communicate their struggles is one of the main drivers of mental ill-health. Support groups and social media create promising opportunities for combating the issue at hand, but social services, medication, NHS understaffing and insufficient attention paid to mothers by health professionals are the main obstacles met by participants in sourcing support. Research is concluded with recommendations regarding the findings.

scholarly journals It's possibly made us feel a little more alienated: How people from ethnic minority communities conceptualise COVID-19 and its influence on engagement with testing.

2021 ◽  
Author(s):  
Tushna F Vandrevala ◽  
Lailah Alidu ◽  
Jane Hendy ◽  
Shuja Shafi ◽  
Aftab Ala
Keyword(s):  
Ethnic Minority ◽  
Minority Groups ◽  
South Asians ◽  
Cultural Beliefs ◽  
Structured Interviews ◽  
Community Members ◽  
The Family ◽  
Testing Uptake ◽  
The Will ◽  
The Uk

Objectives:The cultural beliefs, practices and experiences of ethnic minority groups, alongside structural inequalities and the political economy play a critical, but overlooked role in health promotion. The current study aims to address this deficit, understanding how these groups conceptualise COVID–19, and how this influences engagement in testing, with the future aim of developing targeted communications to address the challenges of testing uptake. Method:Black (African and Caribbean) and South (Asian Indian, Pakistani and Bangladeshi) community members were purposefully recruited across the UK. Fifty seven semi–structured interviews were conducted and analysed using principles of Grounded Theory. Results:The findings illustrate that Black and South Asians conceptualise COVID–19 as a disease that makes them visible to others outside their community, in having more severe risk and suffering worst consequences, resulting in fear, stigmatisation and alienation. Views about COVID-19 were embedded in cultural beliefs, relating to culturally specific ideas around disease, such as ill-health being the will of God. Challenges brought about by the pandemic were conceptualised as one of many struggles, with the saliency of the virus contextualised against life experiences. These themes and others influenced engagement with COVID–19 testing. Testing was less about accessing timely and effective treatment for themselves, and more about acting to protect the family and community. Testing symbolised a loss of income, anxiety and isolation, accentuated by issues of mistrust of the system, and not being valued, or being treated unfairly. Conclusion:In tackling these challenges, we conclude that health communications should focus on counterbalancing the mistrust, alienation and stigmatisation that act as barriers to testing, with trust built using local credible sources.

scholarly journals Community-centred interventions for improving public mental health among adults from ethnic minority populations in the UK: a scoping review

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e041102
Author(s):  
Cleo Baskin ◽  
Geiske Zijlstra ◽  
Mike McGrath ◽  
Caroline Lee ◽  
Fiona Helen Duncan ◽  
...  
Keyword(s):  
Mental Health ◽  
Ethnic Minority ◽  
Minority Groups ◽  
Public Mental Health ◽  
Risk Of Bias ◽  
Minority Populations ◽  
Ethnic Minority Groups ◽  
Ethnic Minority Populations ◽  
The Uk ◽  
Intervention Description

ObjectivesUndertake a scoping review to determine the effectiveness of community-centred interventions designed to improve the mental health and well-being of adults from ethnic minority groups in the UK.MethodsWe searched six electronic academic databases for studies published between January 1990 and September 2019: Medline, Embase, PsychINFO, Scopus, CINAHL and Cochrane. For intervention description and data extraction we used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist and Template for Intervention Description and Replication guide. Quality was assessed using Cochrane risk of bias tools. Grey literature results were deemed beyond the scope of this review due to the large number of interventions and lack of available outcomes data.ResultsOf 4501 studies, 7 met the eligibility criteria of UK-based community interventions targeting mental health in adults from ethnic minority populations: four randomised controlled trials, one pre/post-pilot study, one cross-sectional study and one ethnographic study. Interventions included therapy-style sessions, peer-support groups, educational materials, gym access and a family services programme. Common components included a focus on tackling social isolation, using lay health workers from within the community, signposting and overcoming structural barriers to access. Four studies reported a statistically significant positive effect on mental health outcomes and six were appraised as having a high risk of bias. Study populations were ethnically heterogeneous and targeted people mainly from South Asia. No studies examined interventions targeting men.ConclusionsThere is a paucity of high-quality evidence regarding community-centred interventions focused on improving public mental health among ethnic minority groups. Decision makers need scientific evidence to inform effective approaches to mitigating health disparities. Our next steps are to map promising community activities and interventions that are currently being provided to help identify emerging evidence.

scholarly journals Overt acts of perceived discrimination reported by British working-age adults with and without disability

2019 ◽  
Author(s):  
Eric Emerson ◽  
Allison Milner ◽  
Zoe Aitken ◽  
Lauren Krnjacki ◽  
Cathy Vaughan ◽  
...  
Keyword(s):  
Public Health ◽  
Negative Impact ◽  
Policy Research ◽  
Secondary Analysis ◽  
People With Disabilities ◽  
Public Health Problem ◽  
Health Staff ◽  
Cross Sectional ◽  
Increased Risk ◽  
The Uk

Abstract Background Exposure to discrimination can have a negative impact on health. There is little robust evidence on the prevalence of exposure of people with disabilities to discrimination, the sources and nature of discrimination they face, and the personal and contextual factors associated with increased risk of exposure. Methods Secondary analysis of de-identified cross-sectional data from the three waves of the UK’s ‘Life Opportunities Survey’. Results In the UK (i) adults with disabilities were over three times more likely than their peers to be exposed to discrimination, (ii) the two most common sources of discrimination were strangers in the street and health staff and (iii) discrimination was more likely to be reported by participants who were younger, more highly educated, who were unemployed or economically inactive, who reported financial stress or material hardship and who had impairments associated with hearing, memory/speaking, dexterity, behavioural/mental health, intellectual/learning difficulties and breathing. Conclusions Discrimination faced by people with disabilities is an under-recognised public health problem that is likely to contribute to disability-based health inequities. Public health policy, research and practice needs to concentrate efforts on developing programs that reduce discrimination experienced by people with disabilities.

scholarly journals Ethnic Minority Groups’ Experiences of Suicide Bereavement: A Qualitative Exploratory Study

2021 ◽  
Vol 18 (22) ◽  
pp. 11860
Author(s):  
Pauline Rivart ◽  
Verity Wainwright ◽  
Sandra Flynn ◽  
Isabelle M. Hunt ◽  
Jenny Shaw ◽  
...  
Keyword(s):  
Ethnic Minority ◽  
Online Survey ◽  
Minority Groups ◽  
Secondary Analysis ◽  
Free Text ◽  
Ethnic Minority Groups ◽  
Post Traumatic Stress ◽  
Mental Health Awareness ◽  
Suicide Bereavement ◽  
The Uk

It is estimated that between 36,000 and 360,000 people are affected by suicide every year in the UK, and a proportion may develop depression and post-traumatic stress disorder, or engage in high-risk behaviours. Recent systematic analyses have revealed a clear gap in research on suicide bereavement in minority ethnic groups. This study aimed to understand the experiences and support needs of individuals from ethnic minority backgrounds bereaved by suicide and was the first in the UK to investigate this matter. The study was a secondary analysis of data. Participants were 7158 people residing in the UK who completed an online survey about their experiences of suicide. Free-text qualitative responses of 227 participants who did not identify as White British were analysed using thematic analysis. Four themes were identified: maladaptive coping strategies, emotional processes following suicide, lack of support from agencies, and the importance of mental health awareness. Ethnic minority groups reported a lack of support despite attempts to engage with services, noted the prevalence of stigma within ethnic minority groups, and expressed a need to tackle this. These preliminary results suggest that ethnic minority individuals require visible and accessible services that can successfully engage with and support them.

scholarly journals Impact of tobacco tax increases and industry pricing on smoking behaviours and inequalities: a mixed-methods study

2020 ◽  
Vol 8 (6) ◽  
pp. 1-140
Author(s):  
Timea R Partos ◽  
Rosemary Hiscock ◽  
Anna B Gilmore ◽  
J Robert Branston ◽  
Sara Hitchman ◽  
...  
Keyword(s):  
Public Health ◽  
Health Research ◽  
Tobacco Industry ◽  
Control Policy ◽  
Public Health Research ◽  
Pricing Strategies ◽  
The Uk ◽  
Tax Changes ◽  
The Impact ◽  
Evaluation Project

Background Increasing tobacco prices through taxation is very effective for reducing smoking prevalence and inequalities. For optimum effect, understanding how the tobacco industry and smokers respond is essential. Tobacco taxation changes occurred in the UK over the study period, including annual increases, a shift in structure from ad valorem to specific taxation and relatively higher increases on roll-your-own tobacco than on factory-made cigarettes. Objectives Understanding tobacco industry pricing strategies in response to tax changes and the impact of tax on smokers’ behaviour, including tax evasion and avoidance, as well as the effect on smoking inequalities. Synthesising findings to inform how taxation can be improved as a public health intervention. Design Qualitative analysis and evidence synthesis (commercial and Nielsen data) and longitudinal and aggregate cross-sectional analyses (International Tobacco Control Policy Evaluation Project data). Setting The UK, from 2002 to 2016. Data sources and participants Data were from the tobacco industry commercial literature and retail tobacco sales data (Nielsen, New York, NY, USA). Participants were a longitudinal cohort (with replenishment) of smokers and ex-smokers from 10 surveys of the International Tobacco Control Policy Evaluation Project (around 1500 participants per survey). Main outcome measures (1) Tobacco industry pricing strategies, (2) sales volumes and prices by segments over time and (3) smokers’ behaviours, including products purchased, sources, brands, consumption, quit attempts, success and sociodemographic differences. Review methods Tobacco industry commercial literature was searched for mentions of tobacco products and price segments, with 517 articles extracted. Results The tobacco industry increased prices on top of tax increases (overshifting), particularly on premium products, and, recently, the tobacco industry overshifted more on cheap roll-your-own tobacco than on factory-made cigarettes. Increasingly, price rises were from industry revenue generation rather than tax. The tobacco industry raised prices gradually to soften impact; this was less possible with larger tax increases. Budget measures to reduce cheap product availability failed due to new cheap factory-made products, price marking and small packs. In 2014, smokers could buy factory-made (roll-your-own tobacco) cigarettes at real prices similar to 2002. Exclusive roll-your-own tobacco and mixed factory-made cigarettes and roll-your-own tobacco use increased, whereas exclusive factory-made cigarette use decreased, alongside increased cheap product use, rather than quitting. Quitting behaviours were associated with higher taxes. Smokers consumed fewer factory-made cigarettes and reduced roll-your-own tobacco weight over time. Apparent illicit purchasing did not increase. Disadvantaged and dependent smokers struggled with tobacco affordability and were more likely to smoke cheaper products, but disadvantage did not affect quit success. Limitations Different for each data set; triangulation increased confidence. Conclusions The tobacco industry overshifted taxes and increased revenues, even when tax increases were high. Therefore, tobacco taxes can be further increased to reduce price differentials and recoup public health costs. Government strategies on illicit tobacco appear effective. Large, sudden tax increases would reduce the industry’s ability to manipulate prices, decrease affordability and increase quitting behaviours. More disadvantaged, and dependent, smokers need more help with quitting. Future work Assessing the impact of tax changes made since 2014; changing how tax changes are introduced (e.g. sudden intermittent or smaller continuous); and tax changes on tobacco initiation. Funding This project was funded by the National Institute for Health Research (NIHR) Public Health Research programme and will be published in full in Public Health Research; Vol. 8, No. 6. See the NIHR Journals Library website for further project information.

scholarly journals Postmodernism, ethnicity, and celebrity culture in women’s symbolic consumption

2019 ◽  
Vol 62 (5) ◽  
pp. 561-577 ◽  
Author(s):  
Ayantunji Gbadamosi
Keyword(s):  
Ethnic Minority ◽  
Minority Groups ◽  
Current Knowledge ◽  
African Women ◽  
Specific Reference ◽  
Research Attention ◽  
Symbolic Consumption ◽  
Black African ◽  
Celebrity Culture ◽  
The Uk

Although postmodernism and celebrity culture are closely linked, research attention on this has not been adequately synthesized with ethnic minority groups. Hence, this article, which is rooted in an interpretive research paradigm, explores the symbolic consumption of Black African women in the UK with specific reference to celebrity culture. Although the study shows some purchase decisions based on products’ functionality, generally, it shows the robust interplay of personal, cultural, social, and commercial factors in the symbolic consumption of these women. This is shown to be linked to the prevalent celebrity culture in the society. They consume to enhance their self-esteem and keep up with the societal trend in the host environment. Hence, the notion of acculturation features prominently in their consumption. The article extends the discourse on the extant ethnic minority studies and augments the current knowledge about symbolic consumption especially with reference to Black African women.

scholarly journals Constructing im/migrants and ethnic minority groups as ‘carriers of disease’: Power effects of categorization practices in tuberculosis health reporting in the UK and Germany

Ethnicities ◽  
2019 ◽  
Vol 19 (3) ◽  
pp. 518-534
Author(s):  
Hella von Unger ◽  
Penelope Scott ◽  
Dennis Odukoya
Keyword(s):  
Ethnic Minority ◽  
Minority Groups ◽  
Epidemiological Data ◽  
Vulnerable Groups ◽  
Potential Contribution ◽  
Health Reporting ◽  
Ethnic Minority Groups ◽  
Core Feature ◽  
The Uk

Migration- and ethnicity-related categories are a core feature of public health systems internationally, particularly in health reporting on communicable infectious diseases. The specific categories and classifications used differ from country to country and are subject to controversy and change. The article compares categorization practices in health reporting in the UK and Germany with regard to tuberculosis. Tuberculosis has been framed as a ‘migrants’ disease’ in recent decades and new categories were introduced to collect and report epidemiological data. We reconstruct the genesis, change and power effects of categories related to im/migrants and ethnic minority groups. In both countries, migration-related categorizations entail constructions of im/migrants as ‘carriers of disease’. However, the categories also connect with discourses on human rights, prevention, treatment and care for migrants as vulnerable groups. While this ambivalent role of migration-related categories is not unique to health statistics, the potential contribution to processes of ‘othering’ and politics of exclusion seem particularly imminent in the context of communicable diseases such as tuberculosis. Ethnicity categories used in the UK, but not in Germany, also contribute to othering through racialization and culturalization, yet at the same time provide opportunities for community participation in the discourse.

Sign in / Sign up

Export Citation Format

Share Document