On International Clinical Trials Day, Hannah Cowan, Rachel Faulkner-Gurstein, David Wyatt, and Charlotte Kühlbrandt share their vision for diversity in research. Meta-involvement is crucial for ensuring plurality of voices and providing critical perspectives on research, say the team of social scientists based at Guy’s and Thomas’ BRC and Kings College London.
The pandemic has shone a spotlight like never before on the global importance of clinical research. None of the life-saving diagnostics, treatments and vaccines we have come to rely on emerging from this crisis would have been possible without the willing participation of patients and the public. It is staggering that over one million of us in the UK have taken part in clinical research during the pandemic (NIHR, 2021). As this year’s International Clinical Trials Day theme is all about ‘being part of research’, now seems like a good time to pause and reflect on what being part of research is, could and should be.
‘Being part of research’ can mean taking part in trials to help achieve research goals. But it is just as crucial for patients and publics to bring their own experience and critical eye to the table, and feed into how research is conducted. At present, formal participation in clinical research is usually done by Patient and Public Involvement (PPI) groups formed for specific diseases like cancer and heart disease or individual research projects. These groups can provide opportunities for patients to feedback to researchers on how trials are designed and delivered, for example helping to identify issues with recruitment strategies.
Patient involvement could be so much more than feedback on operational questions about individual research projects. As a team of social scientists trained to view clinical research within its broad social and political contexts, we recognise that patients and publics need to be involved in all stages of the research process in order for the outcomes—the benefits—to be truly democratic. This must include involving patients and the public in discussions of the big issues of our day, such as data sharing, personalised medicine, or vaccine hesitancy. And it must also mean making space for the public to take an active role in determining the direction of travel for research as conducted today and planned for the future, to ensure that medical research ends up being for patient and public benefit – as defined by them. We are calling this approach public ‘meta-involvement.’
‘The public’ is not one static thing and does not speak with one voice. Publics are made up of many, often contradictory, voices. They are diverse and always evolving, and we must ensure that meta-involvement includes views which are as varied as the population itself. Terms such as ‘diversity’ and ‘inclusion’ are increasingly criticised for being empty signifiers, devoid of any meaningful understanding of inequalities (Ahmed, 2012). While expedient, simply using categories such as man/woman or black/white/Asian to speak about diversity, does not accurately represent the more complex and multi-faceted identities of people themselves (Epstein, 2008).
Diversity and inclusion need to be about more than a counting exercise. We need to develop a practice of public participation that is rooted in intersectionality. This means not simply counting how many women, gay people, black people, or young people we have in the room, but acknowledging that people have many facets to their identities which can result in complex combinations of privilege and experiences of inequality. We need to think across these many facets – of disability, immigration status, class, gender identity and so on – to think about whose voices are heard or listened to when we design research questions or develop trial protocols.
We could otherwise end up with research which results in discriminatory technologies, such as medical imaging systems run by artificial intelligence which work better for some people more than others (Wawira Gichoya et al., 2021). One example of this is with the design of skin cancer imaging systems, where most of the data used to build the system is currently from white people. The system is trained to recognise melanoma on white skin, and could mis-diagnose for people of colour (Adamson & Smith, 2018). On the other hand, we can end up thinking too tokenistically and give blood pressure medication based on someone’s skin colour, when skin colour is just one aspect of the biological makeup of that person that may be disassociated from their blood pressure regulation mechanism (Gopal & Francis, 2020).
If we don’t think about inequalities we can end up with medical research – such as the Covid-19 vaccine – that some people – particularly from working class or ethnic backgrounds – do not seem to trust (Robertson et al., 2021). As some of our research data from the pandemic is emerging, this is not so much because of a misunderstanding of the science, but because some people who have been continually discriminated against and let down by public institutions are more sceptical of being told what to do. We need to develop a trusting relationship between researchers and publics, with public input right from the beginning, to ensure the resulting technologies are well received among users.
Crucially, building trust in research is not simply about encouraging publics to learn the science – although making the science clear and transparent to publics is important. People can only trust if they also feel listened to, and there are some important messages which need to be heard. Developing our Utopia Now! project, we have learned that many of the young people we have worked with are worried about a future where everyone is glued to their phones and devices, where human contact is lacking. There is an opportunity here for researchers working on e-health and personalised medicine to think about these issues with young people, otherwise we could end up with many digital interfaces which are left unused.
Medical research needs to respond and adapt to these kinds of concerns. And while there has been much good work to date, we still have further to go. Not only do we need to ensure that people from disadvantaged backgrounds make it into positions of influence, we need to build mechanisms for patient and public input to operational and strategic levels. We need to make sure that the science listens, changes, and adapts to the feedback of patients and publics, and ensure we produce medical science that reacts to the input of people who most need the world to change.
Hannah Cowan is a medical anthropologist interested in social inequalities and health. She is passionate about bringing non-academic communities and researchers together to help shape research agendas and find everyday ways of resisting the reproduction of inequalities.
Rachel Faulkner-Gurstein is a social scientist who studies clinical research systems, including infrastructure, workforce and PPI.
David Wyatt is a sociologist who is currently exploring how COVID-19 has impacted on research and research practices, including PPI.
Charlotte Kühlbrandt is a critical social scientist and PPI Lead for the NIHR Research Design Service London, who is working on developing public meta-involvement in research.
Adamson A. S., Smith A., 2018. Machine Learning and Health Care Disparities in Dermatology. JAMA Dermatology, 154(11):1247–1248. doi:10.1001/jamadermatol.2018.2348
Ahmed, S., 2012. On being included: Diversity and racism in institutional life. Durham: Duke University Press.
Epstein, S., 2008. The rise of ‘recruitmentology’: Clinical research, racial knowledge, and the politics of inclusion and difference. Social Studies of Science. 38(5): 801-832.
Gopal, D.P., Francis, R., 2020. Does race belong in the hypertension guidelines?. Journal of human hypertension. https://doi.org/10.1038/s41371-020-00414-2
NIHR, 2021. UK Covid-19 research passes one million participants. Available at: https://www.nihr.ac.uk/news/uk-covid-19-research-passes-one-million-participants/27215 Published 13th March 2021.
Robertson, E., Reeve, K. S., Niedzwiedz, C. L., et la., 2021. Predictors of COVID-19 vaccine hesitancy in the UK household longitudinal study. Brain, behavior, and immunity, 94:42-50. https://doi.org/10.1016/j.bbi.2021.03.008
Wawira Gichoya J, McCoy LG, Celi LA, et al., 2021. Equity in essence: a call for operationalising fairness in machine learning for healthcare. BMJ Health & Care Informatics, 28:e100289. doi: 10.1136/bmjhci-2020-100289