- Has previous research excluded certain populations?
- What historic and structural issues might affect how under-represented groups feel about research participation or involvement?
- How will you navigate these issues?
Historical context and structural inequalityApplying an inclusion lens to literature reviewing and research question development
Because many health and social care researchers have only more recently become aware of the importance of inclusive research, much of the literature that informs our proposed research is based on designs and sampling strategies that have traditionally yielded predominantly white, male, well-educated samples. Many studies do not report on the ethnicity, socio-economic status and other demographic characteristics of their samples (Vyas et al. 2018; Furler et al. 2012). Of 1518 COVID-19 trials registered on ClinicalTrials.gov by June 2020, only six were collecting data about ethnicity – despite the disproportionately severe impacts of Covid-19 on Black and South Asian people (Treweek et al. 2020).
The needs and perspectives of specific groups remain invisible when they are either not participants in research or are not disaggregated in the analysis (Petkovic et al. 2020; Phillips and Hamberg 2016). This prevents us from knowing whether different groups have different needs or perspectives, or whether an intervention or new service is safe and/or effective for all population groups. Yet, changes to policy and practice are commonly implemented for the whole population based on this partial evidence. This contributes to certain groups of the population being under-served; that is, less likely to be included in research, more likely to experience a higher burden of health and/or social care need, and likely to have different experiences and/or responses to new interventions compared to other groups (NIHR INCLUDE guidance). With research inclusion now recognised as integral to all research, we need to critically reflect on the implications of knowledge gaps about the most under-served groups and avoid reproducing these limitations (Witham et al. 2020).
When describing your research problem, be clear about which groups of the population are affected or where there might be evidence gaps for certain groups.
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Key questions to consider are:
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Historical exclusion and exploitation in research
As researchers, we also need to understand that historic and ongoing experiences of oppression and exploitation can damage trust in health, social care and research professionals.
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The Tuskegee Study was conducted by the United States Public Health Service between 1932-1972 and is a well-known example of unethical and exploitative research. Hundreds of African American men with syphilis were recruited into a study where they were told that they were receiving medical treatment ‘for bad blood’. In reality, the researchers’ intention was to observe the natural progression of untreated syphilis, and the participants were not given any useful treatment. Even when penicillin became routinely available as a treatment for syphilis in the 1940s, the researchers made every effort to deny participants this treatment, even ordering doctors not to offer medication. This led to the unnecessary suffering and premature death of many participants, as well as transmission to their wives and children (Reverby 2010). |
In contemporary times, statistics from Public Health England (PHE) about uptake of the Covid-19 vaccine in England indicate that amongst the over 50s, 95.4% of White British and 93.6% of Indian people had received two doses by October 2021. This was compared to 70.1% of Black Caribbean and 78.1% of Black African people (PHE 2021). Qualitative research conducted by ARC East Midlands (2020) revealed the concerns which different minority and/or marginalised groups have about participating in vaccine trials. Black African and African-Caribbean communities were most suspicious about the vaccine and questioned whether there was a hidden agenda to use Black people as ‘guinea pigs’ or even seek to eradicate them.
These suspicions need to be understood in the context of ethical atrocities and long-standing health and care inequalities which signal that Black people’s lives have less worth. For example, from univariate analysis from mortality reports, Black women have more than a four-fold risk of dying during childbirth (Knight et al. 2020) and Black people are almost four times more likely than white people to be sectioned under the Mental Health Act (NHS 2020). Many other groups have experienced exploitation or exclusion. Girls and women have been under-diagnosed with autism and not given appropriate care and support due to assumptions and diagnostics being based on how autistic boys and men present (Lockwood Estrin et al. 2020). Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) people may have been refused care or subjected to harmful and demeaning treatments (Vincent, 2018; Smith et al. 2004).
Structural inequality and injustices lead to mistrust and fear of health and social care professionals, and of researchers. This is exacerbated by under-served communities having limited understanding of research because they are seldom offered opportunities to participate. Sensitive and committed outreach, relationship-building and public involvement will be required to build trust and encourage participation (Prinjha et al. 2020; Hussain-Gambles 2004). Keeping to your promises is vital when working with groups that have been repeatedly exploited and disrespected, as well as being clear and realistic about what the benefits of research participation will be.
Key messages
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Including LGBTQIA+ voices in dementia research RDS client and dementia researcher, Dr Claudio di Lorito, noticed that participants in dementia research do not appear to include lesbian, gay, bisexual, transgender, queer, intersex and/or asexual (LGBTQIA+) people. Why does this matter? As a member of the LGBTQIA+ community himself, Claudio is all too aware of the struggles that LGBTQIA+ people have faced to gain social and legal recognition. Initial scoping via LGBTQIA+ voluntary organisations reinforced Claudio’s observation that LGBGQIA+ people’s experiences are not informing or shaping dementia care.
This has propelled Claudio to plan research to examine LGBTQIA+ people’s experiences and develop a training package for staff working in dementia support services. Together with colleagues who were also passionate about this issue, Claudio conducted a scoping review to source literature about LGBTQIA+ people’s needs and barriers to help-seeking for dementia. This scoping review, now published in the Journal of Aging & Mental Health,
These barriers were also brought to life when Claudio met Neil, a former carer to his late lifetime partner who had passed away after a long a struggle with dementia a few years ago.
Neil has joined the research team to contribute critical insights informed by his lived experience. In addition, the team have engaged extensively with relevant stakeholders. Multiple dementia and LGBTQIA+ organisations have come on board as partners and the study has been supported by NHS directors across the East Midlands. Quotes in this case study have been taken from a blog written by Dr Claudio di Lorito for the Institute of Mental Health in Nottingham, written in December 2021. |
ARC East Midlands (2020) Public perceptions towards vaccine trial research within ethnic minority and vulnerable communities, Leicester: ARC East Midlands.
Furler, J. et al. (2012) ‘Participant demographics reported in "Table 1" of randomised controlled trials: a case of "inverse evidence"?’, International Journal for Equity in Health, 11: 14.
HussainâGambles, M., Atkin, K. and Leese, B. (2004) ‘Why ethnic minority groups are underârepresented in clinical trials: a review of the literature’, Health & Social Care in the Community, 12: 382-388.
Knight et al. on behalf of MBRRACE-UK (2020) Saving Lives, Improving Mothers’ Care: Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2016-18, Oxford: National Perinatal Epidemiology Unit, University of Oxford. Available online at: https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/maternal-report-2020/MBRRACE-UK_Maternal_Report_Dec_2020_v10_ONLINE_VERSION_1404.pdf (accessed 27/04/21).
NHS (2020) ‘Mental Health Act Statistics, Annual Figures 2019-20’. Available online at: https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-act-statistics-annual-figures/2019-20-annual-figures (accessed 27/04/21).
Petkovic, J. et al. (2020) ‘Reporting of health equity considerations in cluster and individually randomized trials’, Trials, 21: 308.
Phillips, S.P. and Hamberg, K. (2016) ‘Doubly blind: a systematic review of gender in randomised controlled trials’, Global Health Action, 9:1.
Prinjha, S. et al. (2020) ‘Including ‘seldom heard’ views in research: opportunities, challenges and recommendations from focus groups with British South Asian people with type 2 diabetes’, BMC Medical Research Methodology, 20: 157.
Public Health England (PHE) (2021) COVID-19 Health Inequalities Monitoring for England (CHIME) tool. Available online at: https://analytics.phe.gov.uk/apps/chime/ (accessed 19/01/22).
Reverby, S. (2010) ‘A new lesson for the old “Tuskegee” Study’. Available online at: https://www.huffpost.com/entry/a-new-lesson-from-the-old_b_378649 (accessed 19/01/22).
Smith, G., Bartlett, A. and King, M. (2004) ‘Treatments of homosexuality in Britain since the 1950s – an oral history: the experiences of patients’, BMJ, doi:10.1136/bmj.37984.442419.EE
Treweek, S. et al. (2020) ‘COVID-19 and ethnicity: who will research results apply to?’, The Lancet, 395: 1955-1957.
Vincent, B.W. (2018) ‘Studying trans: recommendations for ethical recruitment and collaboration with transgender participants in academic research’, Psychology & Sexuality, 9(2): 102-116.
Vyas, M.V. et al. (2018) ‘Representation of ethnic groups in dementia trials: systematic review and meta-analysis’, Journal of the Neurological Sciences, 394: 107-111.
Witham, M. et al. (2020) ‘Developing a roadmap to improve trial delivery for under-served groups: results from a UK multi-stakeholder process’, Trials, 21: 694.