Excuse my ethnicity: Research in a world where whiteness is the “norm”

Dr Yinting Ta, Palliative Medicine Registrar at St Joseph’s Hospice, London and APM Research & Ethics Committee Trainee Representative

 

Surprise!

No one likes bad surprises, but I’m afraid I have one here.

Yen et al.’s recent paper on the improved prognostic accuracy of the combined use of the ‘surprise question’ and palliative care screening tool, has important applications in the quest to improve the provision of timely palliative care1. However, what surprised me was the authors’ query about the generalisability of their results outside of Asian ethnic groups, as almost all participants were Taiwanese.

This might not seem an unreasonable comment, but in the same issue of BMJ Supportive & Palliative Care in which this paper appears, there are three other original research articles. The paper by Mah et al. on patients with advanced cancer and the effect of early palliative care on patient satisfaction2 focuses on patients in Toronto, Canada. The article does not include data on nor comments on ethnicity but the latest available census data3 indicates that approximately half of the population in Toronto belongs to ‘minority’ groups. The paper by Centeno et al. investigating methylphenidate versus placebo in cancer-related fatigue also provides no data on ethnicity4. But the population in Spain, where most of the authors are affiliated, is described as 85% Spanish in 2021 data5 – there is no caveat regarding the external validity of these results. Finally, the cohort in Mann et al.’s study on swallowing dysfunction after minimally invasive oesophagectomy6 was identified as 92% Caucasian, but again this is not deemed note-worthy in the discussion.

Tragically, health inequalities are worsening in the UK, and this is even more pronounced for minority ethnic groups7. Last year, Hussain at al. shone a light on the “pernicious pandemic of racism in healthcare and society” and importantly, highlighted that palliative care is certainly not immune8. They described not just inequitable access to palliative care for minority ethnic groups, but the role that services and researchers must play in taking anti-racist action. Furthermore, Khiroya and Willis have highlighted structural discrimination and a lack of ethnic diversity in the palliative care workforce itself in the UK9.

As well as being more cognisant of the representativeness of the populations they study and normalising the inclusion of data on ethnic backgrounds, researchers and publishers alike could do with remembering that whiteness is not and should not be considered the unspoken, universal “norm”.

Now more than ever, we need to deepen our understanding of all those we aim to serve, including ethnicity and its impact. Studies with homogenous cohorts can of course still aid this, but we should acknowledge such situations across all ethnicities, and not merely to ‘other’ non-white patients, families and colleagues alike.

As a standard, all published articles should include ethnicity data. I hope that palliative care will practice what it preaches and take this simple but fundamental anti-racist action.

 

 

References:

  1. Yen Y, Lee Y, Hu H, et al, Early palliative care: the surprise question and the palliative care screening tool—better together BMJ Support Palliat Care 2022;12:211-217.
  2. Mah K, Swami N, O’Connor B, et al Early palliative intervention: effects on patient care satisfaction in advanced cancer BMJ Support Palliat Care 2022;12:218-225.
  3. 2016 Census: Housing, Immigration and Ethnocultural Diversity, Aboriginal peoples https://www.toronto.ca/wp-content/uploads/2017/12/8ca4-5.-2016-Census-Backgrounder-Immigration-Ethnicity-Housing-Aboriginal.pdf (Accessed: July 2022).
  4. Centeno C, Rojí R, Portela MA, et al Improved cancer-related fatigue in a randomised clinical trial: methylphenidate no better than placebo BMJ Support Palliat Care 2022;12:226-234.
  5. Instituto Nacional de Estadística https://www.ine.es/jaxiT3/Tabla.htm?t=9691&L=1 (Accessed: July 2022).
  6. Mann D, Benbow JH, Gower NL, et al Swallowing dysfunction after minimally invasive oesophagectomy BMJ Support Palliat Care 2022;12:235-242.
  7. Health Equity in England: The Marmot Review 10 Years On https://www.health.org.uk/publications/reports/the-marmot-review-10-years-on (Accessed: July 2022).
  8. Hussain JA, Koffman J, Bajwah S. Invited Editorials Palliat Med 2021;35(5):810-813.
  9. Khiroya H, Willis D Lack of racial diversity within the palliative medicine workforce: does it affect our patients? BMJ Support Palliat Care 2022;12:49-51.

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