Four ways to help beat health inequities in the face of USAID cuts

In the past few weeks, global health research programmes have been shaken by events in the United States. These include the country’s intention to withdraw from the World Health Organization, a freeze on foreign aid from the US Agency for International Development (USAID) and the dismantling of diversity, equity and inclusion (DEI) initiatives. HIV programmes are closing down, trials of malaria drugs have ceased and academic societies and universities have scrubbed their websites of mentions of DEI.

Against this backdrop, continued efforts to reduce health inequities remain crucial. In the United States, for example, Black women are more likely to die of breast cancer than are white women¹. Globally, most clinical trials and biomedical studies focus on men of European ancestry, hindering efforts to improve the health of other communities. Under-represented groups struggle to access health care that meets their needs.

Here, four experts share insights into how to win the trust of under-represented communities to conduct research that can help to achieve health equity.

LYNN HENDRICKS: Embrace unconventional methods

Inclusivity in health research means embracing research styles that best meet a population’s needs and priorities. Sometimes that might mean adopting approaches that don’t look much like typical scientific experiments.

As a public-health researcher, I’ve found that the creative arts are a great way to connect with communities that might otherwise be disenfranchised from science. Art can cross language and cultural boundaries and can be harnessed to discuss emotions, experiences and challenges. For instance, I’ve used craft and digital storytelling to explore the lives of people who grew up on the streets in South Africa, who do not usually trust anyone easily.

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Art can enable participants to be co-researchers. Part of one study I conducted set out to fill in evidence gaps about the barriers that prevent young women living with perinatal HIV from taking daily antiretrovirals, with the participants driving the project². Together, we used photographs and videos to study their lives; drawing and collage to identify the key challenges they face; and dance and documentary-making to decide what we wanted to share with others (see go.nature.com/4t6zh5j).

Some might say that these approaches cannot provide the same concrete findings as conventional methods. A more-typical study might have explored the barriers to and facilitators of medication adherence. By contrast, our work revealed a complex net of intersecting environmental factors that had not previously been considered — such as sounds and objects in the women’s surroundings, the tolls taken by hazardous trips to the clinic and the unpleasant sensation of taking the medicine.

Ethics boards should be more receptive to participant-led research. The HIV project was questioned by the ethics committee, which wanted specific objectives and methodologies — the typical route for getting ethical clearance. But truly inclusive research requires a fundamental shift in power dynamics, recognizing the importance of participant comfort and agency to dictate the course of the research.

Researchers and institutions should embrace the fact that unconventional research can lead to unconventional research outputs. As well as academic publications, our project produced videos, art exhibitions and photo essays. These outputs should be accepted as valuable products of research. Indeed, they can be more useful than papers when it comes to engaging stakeholders outside science — such as policymakers and local governments — because they are easily understandable by all.

RAEKA AIYAR: Rebuild trust with empathy

Many minoritized communities share a justifiable distrust of science, because of the long history of exploitation and harm by researchers and physicians. The onus is on scientists to rebuild the trust in these relationships, so that we can engage these communities as partners — not subjects.

I learnt the hard way how even well-intentioned science can amplify mistrust. In 2013, I co-authored the first reported genome sequence of a HeLa cell line³, one of the most widely used cell lines in biomedical science. The scientific community initially shared our excitement about the value of these data for genetic research. But we failed to anticipate the views of the family of Henrietta Lacks, the Black woman whose tumour sample was used to create HeLa cells in the 1950s without her knowledge.

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The Lacks family responded with frustration and concern about how the genome data could affect their privacy, so we pulled the data down from the public domain. Ultimately, the US National Institutes of Health — which had funded a separate study of the HeLa genome — engaged with the family over several months, and we reached an agreement to restore the data under controlled access.

There are many lessons to be learnt from our oversight. Before beginning a study, scientists should always ask: how will the communities that are affected by the research perceive it? Could the way in which the data are presented amplify a fear or harmful narrative? Can the research design be improved to bring more benefits to the communities?

Finding the answers starts with empathy. Scientists and science communicators should listen to the stories of the people behind the data. Understanding our own privileges and biases in the light of diverse perspectives makes us better, more objective scientists.

Communities that might be affected by research should be asked for input respectfully, early and often. We as researchers should share our hopes for what our research will achieve; listen and respond to concerns; continue the dialogue if communities are willing; and desist if they are not — even if that means stopping a project.

For some communities, letting scientists continue to benefit more from their data than the communities do will be a non-starter. An Indigenous community whose land was stolen, for example, might be understandably reticent to openly share their genome data. Given the current upheaval in US funding, it is urgent that funders and institutions train and incentivize scientists to learn from these communities and build more effective research programmes, together.

Believing that everyone deserves to benefit from research is not sufficient to rebuild trust with communities that have been abused in the name of science. Open-hearted engagement with diverse communities and responsible communication of science — including honest reckoning with systemic discrimination — are crucial, now more than ever.

UMA PALANISAMY: Centre communities throughout projects

As researchers, it can be easy to fall into the trap of thinking that because we are trained in scientific processes and well acquainted with the literature in our field, we are ideally placed to design experiments and interventions. But what we think will work best is not as important as the stakeholders we want to help. Scientists must be willing to listen, adapt and alter research plans, to suit a community’s needs.

The Deaf community in Malaysia has a unique language and cultural identity. This causes problems for Deaf people when it comes to accessing health-care services — with sign-language interpreters in short supply, Deaf people can find themselves trying to explain a complex medical condition to a physician who can’t understand them, and whom they cannot hear. I’ve been involved in developing an app, called Deaf In Touch Everywhere (DITE), to improve health-care access for Deaf Malaysians by providing real-time sign language interpretation services through video conferencing, among other support services.

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