To restore trust in science, make it accessible; here’s how

American trust in medical science is waning. Less than a third of adults — just 29 percent — report having “a great deal of trust” in medical researchers, according to a report from the Pew Charitable Trust. For most of our careers, but accelerating during the COVID pandemic, there has been a worrisome gap between those of us who conduct research and the public.

It’s time for both researchers and research funders to rethink and strengthen how they engage the communities around them — and to work closely with those communities to articulate research in a more meaningful way.

Presenting research in arcane and overly technical ways that are nearly impenetrable to people without advanced training and a dictionary to decipher the jargon is harmful to building positive relationships between researchers, the public, and policymakers.  

Did you ever stop to ask yourself why? Does it really need to be so complex? And should researchers, particularly those who are publicly funded, have some sort of obligation to share their findings with the public in easier ways?

While science can be complex, dissemination doesn’t have to be.

Plain language does not necessarily diminish rigor; instead, it can facilitate engagement and further learning. Overly technical language, on the other hand, excludes participation. People simply tune it out. It can also reinforce dominant narratives that privilege scientific knowledge over other forms of knowing and learning, which further separates science from the public. The further apart we are, the greater the space for misunderstanding.

Both of us have been among a small, but rapidly growing and vibrant subset of researchers who recognize the harms of the academy and the need for community leadership in research. Typically called community-based participatory research, this approach has been supported to some extent by the National Institutes of Health and other research funders, but remains a tiny fraction of research conducted in the United States. 

One feature that stands out from our experience is that working directly with community members or stakeholders on the science can help create co-learning opportunities and the development of lasting relationships built on trust and mutual understanding. This happens because community-researcher collaborations require that each party spend a lot of time learning to communicate in the language of the other. However, it can’t and won’t happen if we researchers stay within the walls of the university. 

We need to get out into the community and learn about local priorities and identify shared interests. We also know that it doesn’t happen overnight and it’s not easy. Relationships by nature require time and effort. They generally involve give and take, discomfort, and sometimes hurt feelings along the way. The benefits are the learning that happens as we grow together. 

For example, we have been working in partnership with communities on the study of traffic-related air pollution for more than a decade. While the science of air pollution and its impact on the body are indeed complex, we have worked closely with community leaders and residents across all phases of the research process. This has resulted in broad participation and the development of meaningful air filtration interventions, as well as the development of culturally relevant health communication materials.

Our community partners have stuck with us for years, listening and participating in discussions about collecting, processing, analyzing, and interpreting data. Over the course of time, we have all had to compromise and learn from each other. The public and social issues we are working to address are pressing and vitally important. Research is one important tool that can make real change; however, it is challenging, time-consuming and uncertain. Even impressive research efforts usually do not fully resolve an issue we are trying to tackle.

We worry about the low level of public trust in medical science and research, as well as the lack of opportunities for participation in research given the amount of public tax dollars invested in this area. This public trust issue calls into question whether our current model of research funding is the most effective approach.

Organizations fund academic institutions and expect them to have the capacity to involve the public, despite the gulf between the public and those of us embedded in the academic research enterprise. How do we solve this?

• Expand community involvement in research decision-making and agenda-setting at the federal level through the re-establishment of the NIH Director’s Council of Public Representatives.
• Establish greater research accountability by disseminating research findings well beyond academic journals in simple, clear language through funding guidelines that require research findings be communicated to the public and translated into action.

These changes can ensure that research is responsive to community priorities, involves community partners, and effectively communicates important findings to the audience that needs them.

Linda Sprague Martinez is associate professor at the School of Social Work and co-director of the Clinical and Translational Science Institute’s Community Engagement Program, Boston University. 

Doug Brugge is professor and chair of the Department of Public Health Sciences Health Net, Inc., and endowed chair in Community Medicine, UConn Health.