Being heard, not, “seldom heard”: democratising research with diverse communities during the covid-19 pandemic

Debates in global health research have long called for a move away from semi-colonial approaches to research, which primarily serve the interests of populations in high income countries to more equal partnership models. [1] These calls stem from the fact that morbidity and mortality rates in poor and middle income countries greatly exceed those of high income countries. [2]

The current covid-19 pandemic in the UK (as elsewhere) raises similar issues of inequality. Stark disparities in mortality rates and excess deaths have been exposed for  Black, Asian and Minority Ethnic communities, disabled people, those on lower incomes and living in the most deprived areas, care home residents, and those in the poorest health. Yet these groups are least likely to be involved in the design and implementation of research. [3,4] This reflects wider patterns of public sector involvement which show that those most likely to be involved are older, from white ethnic groups, and higher socio-economic backgrounds. [5,6] 

The National Institute for Health Research (NIHR), have called for the public to be involved in covid-19 research, reflecting well established arguments about the benefits and moral imperative of doing so. [7,8] The NIHR Applied Research Collaborations (ARCs), set up in October 2019 to support applied health and care research, that respond to, and meet, the needs of local populations and local health and care systems, focus on addressing health inequalities. These bodies have an important role to play in helping to build more democratic models of research in partnership with diverse communities.

Four weeks ago we held a community Zoom event in the ARC South London to get information from diverse groups to feed into a UK Parliamentary call for evidence of the impact of covid-19 on people with “protected characteristics” (age, disability, gender reassignment, race, religion or belief, sex, sexual orientation, marriage and civil partnership and pregnancy and maternity.) [9] We advertised on eventbrite, twitter, and targeted local community contacts. Within 48 hours, registration for the event was full and 52 people attended. This demonstrates that diverse groups are perfectly willing to come forward at short notice to talk about their experiences and are capable of making themselves heard, if they are given opportunities to do so. 

The main findings of the event showed that those who already face some of the greatest health disadvantages are in danger of seeing these worsen as a result of the pandemic [see full Parliamentary Submission].

Issues about access and equality included:

– Pregnant women facing increasing fear and isolation as a result of appointments being cancelled, birth choices restricted and women too scared to come into hospital. Particular concerns were raised by Doulas, about verbal and emotional abuse of some women from black and minority ethnic groups and poor treatment, which these women perceived to be driven by racist attitudes. 

– People from black and minority ethnic groups with higher risks from the virus, talked about being fearful of attending outpatient appointments or attending hospitals with other symptoms, or going to get medication or blood tests. 

– People with disabilities or learning difficulties were worried about discrimination in attending hospital, getting transport and whether they would be treated fairly in terms of access to resources and ventilators. 

– Participants also reported that digital exclusion prevented many vulnerable people accessing primary care and could affect people trying to submit benefit claims. 

Loss of face to face services was also a key concern:

– Mental health service users talked about the impact of suddenly losing all their mental health appointments (community services, GP, therapy etc), and a lack of information about 24/7 crisis lines which were meant to be in place. 

– An organisation providing support for LGBT+ people raised issues about the large decrease in people attending their mental health drop-in services. They were concerned that groups such as young people and those living with HIV, who might not be “out” at home, might be less comfortable using online services. 

– Participants felt there should also be more support for blind people, struggling to socially distance safely; disabled pupils with special educational needs, not receiving the same level of educational support compared to their non-disabled peers; and for groups like travellers who moved around a lot.

These issues raise a clear need for healthcare organisations to take an equalities approach to redress further inequalities that are arising as an impact of the pandemic: to ensure fair access and targeted information for diverse groups and to address racism, disability and other forms of discrimination in healthcare services. 

More broadly, there is a need to consider key questions about diversity and inclusion in covid-research, that go beyond patient and public involvement. The focus needs to move past talking about groups who are “seldom heard”, to addressing structures that exclude these groups in decision-making, so that their voices and contributions can be made in co-producing change, which is needed now and in the future. 

Key questions which stem from our findings  include:

– How can local diverse communities be represented and equality and diversity issues addressed in research institutions and structures, on Ethical review boards and key advisory committees?

– What are the best ways for research groups to be inclusive and recruit diverse participants? 

There is now a real need to diversify and democratise research spaces so that a much wider group of public perspectives and researchers can be involved. How to achieve this should be an important priority in ensuring covid-19 related research can achieve the maximum impact in alleviating suffering and advancing wellbeing. The experience of our Zoom event suggests that diverse groups are perfectly willing to come forward and are capable of making themselves heard—if they are given the support and opportunity to do so. 

Josephine Ocloo works at King’s College London as the diversity and Inclusion lead for the NIHR ARC South London and as a research fellow in the NIHR Mental Health Policy Research Unit.

Twitter: @joocloo

Competing interests: None declared.

Acknowledgements: I would like to thank the ARC PPI Coordinator Savitri Hensman, and a wider team Madelene Boyton, Michelle Harris-Tafri, Nick Sarson and Flavia Bertini who helped to organise the Zoom event.


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