Four ways to help beat health inequalities in the face of USAID Cups

In recent weeks, global health research programs 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 of the American Agency for International Development (USAID) and the Disassembly of diversity, equity and inclusion initiatives (DEI). HIV programs close, trials of malaria drugs have ceased and societies and university universities rubbed their dies of dei mentions.

In this context, continuous efforts to reduce health inequalities remain crucial. In the United States, for example, black women are more likely to die of breast cancer than white women¹. Globally, most clinical trials and biomedical studies focus on men of European ancestry, which hinders efforts to improve the health of other communities. Sub-represented groups find it difficult to access health care that meets their needs.

Here, four experts share information on how to gain the confidence of under-represented communities to conduct research that can help achieve health equity.

Lynn Hendricks: adopt unconventional methods

Inclusive in health research means adopting research styles that best meet the needs and priorities of a population. Sometimes this can mean adopting approaches that do not look much like typical scientific experiences.

As a public health researcher, I found that creative arts are a great way to connect with communities that could otherwise be deprived of science. Art can cross the boundaries of language and cultural and can be exploited to discuss emotions, experiences and challenges. For example, I used craft and digital narrations to explore the lives of people who grew up in the streets in South Africa, who generally trusts anyone easily.

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Art can allow participants to be co-researchers. Part of a study that I carried out decided to fill the gaps in evidence on the obstacles which prevent young women living with perinatal HIV from taking daily antiretrovirals, the participants leading the project². Together, we used photographs and videos to study their lives; drawing and collage to identify the main challenges they face; and dance and documentary manufacturing 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 results as conventional methods. A more typical study could have explored the obstacles and facilitators of drug support. On the other hand, our work revealed a complex net of environmental factors that had not been taken into account – such as sounds and objects in the environment of women, the tolls taken by dangerous trips to the clinic and the unpleasant feeling of taking the medication.

Ethics councils should be more receptive to research led by participants. The HIV project was questioned by the Ethics Committee, which wanted specific objectives and methodologies – the typical path to obtain an ethical authorization. But the really inclusive research requires a fundamental change in the dynamics of power, recognizing the importance of the comfort and the agency of the participants to dictate the course of research.

Researchers and institutions should adopt the fact that unconventional research can lead to unconventional research results. In addition to academic publications, our project has produced videos, art exhibitions and photo tests. These results must be accepted as precious research products. Indeed, they can be more useful than articles when it comes to hiring stakeholders outside the sciences – such as decision -makers and local governments – because they are easily understandable by all.

Raeka Aiyar: Rebuild Trust with Empathy

Many minority communities share a justifiable distrust of science, due to the long history of exploitation and damage by researchers and doctors. It is the responsibility of scientists to reconstruct confidence in these relationships, so that we can engage these communities as partners – not subjects.

I learned of the hard way how well -intentioned science can amplify mistrust. In 2013, I co-wrote the first sequence of genome indicated in a Hela cellular line³One of the most used cell lines in biomedical science. The scientific community initially shared our enthusiasm as to the value of this data for genetic research. But we did not anticipate the opinions of the Henrietta family is missing, the black woman whose tumor sample was used to create Hela cells in the 1950s without her knowledge.

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The lack of family responded with frustration and concern about how genome data could affect their privacySo we removed data from the public domain. In the end, the United States National Institutes of Health – which had financed a distinct study of the hela genome – engaged in the family for several months, and we have reached a Agreement to restore data under controlled access.

There are many lessons to learn from our supervision. Before starting a study, scientists should always ask: how do communities that are affected by research perceive it? Could the data presented amplify a harmful fear or story? Can research design be improved to provide more advantages to communities?

Find the answers starts with empathy. Scientists and scientific communicators should listen to people’s stories behind the data. Understanding our own privileges and prejudices in the light of various perspectives makes us the scientists better and more objective.

Communities that may be affected by research must be requested respectfully, early and often. As researchers, we should share our hopes for what our research will do; Listen and respond to concerns; Continue dialogue if the communities are arranged; And abstain if they are not – even if it means stopping a project.

For some communities, let scientists continue to benefit more from their data than communities will not be a non-starter. An indigenous community whose land has been stolen, for example, could be naturally reluctant to openly share their genome data. Given the current upheavals in American financing, it is urgent that donors and institutions form and encourage scientists to learn from these communities and build more efficient research programs together.

Believing that everyone deserves to benefit from research is not enough to rebuild trust with communities that have been abused in the name of science. Commitment to the heart open with various communities and responsible communication of science – including honest calculations with systemic discrimination – are more than ever crucial.

UMA PALANISAMY: central communities through projects

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

The deaf community in Malaysia has a unique cultural language and identity. This causes problems for the deaf when it comes to accessing health services – with more rare sign language performers, deaf people can find themselves trying to explain a complex medical condition to a doctor who cannot understand them and that they cannot hear. I was involved in the development of an application, called Deaf in Touch Everywhere (said), to improve access to health care for deaf Malaysians by providing sign language interpretation services in real time through videoconference, among other support services.

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