Examining how the general public and healthcare professionals understand and use ethnicity, race, and ancestry concepts in health research and care

Supervisors:

Primary Supervisor: Dr Riya Patel rp526@leicester.ac.uk 
Professor Kamlesh Khunti kk22@leicester.ac.uk 
Co-Supervisors: Dr Chiara Batini  Dr Ash Routen

Ethnicity, race and ancestry are common classification variables used in health research. However, the terms are often used synonymously or with different meaning creating confusion and limiting the interpretability of research when applied. There has been much ongoing debate around population categories in particular how they should be defined, the purpose of the categories, the harms and benefits of these categories when applied, as well as strengths and limitations of current guidelines. COVID-19 in particular reignited the debate around defining population categories, the ethnicity--based health disparities in infection and death reiterated the importance of racially stratified data in order to better understand racial disparities and health inequalities.
How ethnicity, race and ancestry are understood, interlinked and used by healthcare professionals and the general public is relatively underexplored. Accurate terminology is essential in science; how relevant these categories are considered to individuals and how they identify with each these and what meaning they ascribe will help to better conceptualise these for health research and care. 

The aims, objectives and methodology of this studentship will be refined and finalised by the successful candidate once they have begun the studentship, with support from the team of supervisors. However, currently proposed aims and methodology are summarised below.

The primary objective of this doctoral studentship is to explore the perceptions of both the general public and health care professionals in the UK regarding the concept of ethnicity (and allied terms of race and ancestry) and its application in health research and care settings.

Methodology:

It is likely this PhD will adopt a mixed-methods approach. The project plan and methodology will be refined and finalised when the successful candidate has begun their studentship, however the following outline is currently proposed: 

1) A systematic review of key policy documents and recent evidence to understand how concepts are currently being applied and overview of the recommendations.

2) Employ suitable qualitative research methods, such as employing focus groups and conducting semi-structured interviews, to investigate the understanding, conceptualization, and utilisation of the concepts of ancestry, race, and ethnicity among public and healthcare professionals responsible for collecting ethnicity information.

3) Triangulate outcomes from objectives 1 and 2 to identify similarities and differences in conceptualisations, to inform a consensus-building activity, such as the nominal group technique or Delphi method, engaging various stakeholders, including healthcare professionals, researchers, and the general public. The objective is to establish consensus on the conceptualisation and collection of ethnicity, race, and ancestry information for future use in health and social care research and settings.

4) Utilise the insights gathered from objective 3 to formulate recommendations, such as key principles or a toolkit, for distribution to pertinent stakeholders.

The successful applicant will be embedded with a team of experts in qualitative research methods, population genomics and ethnicity and health. Training and support in a wide variety of research methodologies is available where necessary. The PhD project will be integrated into a vibrant postgraduate research community within the Diabetes Research Centre and the Centre for Ethnicity and Health at the University of Leicester, and help advance the aims of the Applied Research Collaboration (ARC) East Midlands.

Relevant references: 
Callier, S. L. (2019). The use of racial categories in precision medicine research. Ethnicity & disease, 29(Suppl 3), 651.
Lu, C., Ahmed, R., Lamri, A., & Anand, S. S. (2022). Use of race, ethnicity, and ancestry data in health research. PLOS Global Public Health, 2(9), e0001060.
Mauro, M., Allen, D. S., Dauda, B., Molina, S. J., Neale, B. M., & Lewis, A. C. (2022). A scoping review of guidelines for the use of race, ethnicity, and ancestry reveals widespread consensus but also points of ongoing disagreement. The American Journal of Human Genetics.
Vyas, D. A., Eisenstein, L. G., & Jones, D. S. (2020). Hidden in plain sight—reconsidering the use of race correction in clinical algorithms. New England Journal of Medicine, 383(9), 874-882.