How to communicate research and health policy during the Pandemic

Author: 
Emilia Chiscop-Head, PhD, ASIST

Duke communications experts discussed the multiple facets of effective communication during a crisis like the one we are living in now

 

What has the COVID 19 pandemic taught us about communicating research results and public health recommendations? How can researchers maintain high integrity standards in their communications when there is uncertainty, increased public attention, and an urgency to share any updates as quickly as possible?

More than 180 members of the Duke research community joined our recent town hall on “Communicating Research and Health Policy During the Pandemic” to hear from a panel of experts in health policy, ethics and research communications.

A few key factors have amplified the impact of COVID 19 on public health – Dr. Don Taylor, Professor of Public Policy in the Duke Sanford School and Director of SSRI, said in the beginning of his talk. The first one, he added, is uncertainty. Second, the existing systemic dysfunctions – “such as the deficient, underfunded, fragmented, and long-term care system; the Medicaid (non)-expansion; questionable data sharing practices in the public health system; and a lack of investment in public health.” A third factor “which makes everything worse, is that science and public health are being politicized,”  Taylor added.

Taylor’s research is in long term care systems and end-of-life policy. He has studied patient decision making and Medicare policies on hospice and palliative care and has served on several prestigious committees, such as the National Academies Committee on Health Care Utilization and Adults with Disabilities and the HRSA Negotiated Rulemaking Committee, created by the Affordable Care Act to investigate medically underserved areas.

“Long term care facilities were like gasoline for a novel pandemic. Twigs waiting for a spark,” Taylor remarked. As he wrote in an earlier article published by STAT News, “less than 1% of Americans live in nursing homes, yet these facilities account for between 15% and 25% of Covid-19 cases and half of all deaths from the disease in some states; in Minnesota, nursing home residents and workers account for 81% of all Covid-19 deaths.” Overcoming the pandemic would therefore require managing the pandemic in nursing homes and hospices. The pandemic also showed a systemic struggle with data systems and reporting roles: “How is it possible that some hospitals in North Carolina report one day 75% admitted patients and the next day 91%?” Taylor asked rhetorically. “Questions about how public health data are being reported have been asked for a long time by policy researchers and public health experts and are now coming into the public eye.”

Ideology and politics played a huge role in this crisis. “The essence of public health is you protect the individual by doing what's best to protect the group.  I don't think that in our country many people think that way. Public health is being undermined by the ideas of personal freedom and liberty that are deeply ingrained in the U.S.,” Taylor concluded.  Therefore behavioral change is needed to change the public understanding of public health. And communication is key to achieving this goal. Communicating health policy needs to be evidence-based, accurate and, to the highest extent possible, de-politicized.

“We have an ethical imperative to address health crises through research. The Nuffield Council for Bioethics told us that the response to a crisis like this needs to be evidence-based and proportionate,” continued bioethicist Chris Simon, whose talk focused on ethical challenges of research publishing during the Pandemic.  An avalanche of research papers published during the last months: from 50 papers in January - a month after the first COVID 19 case was reported in China - to 23,000 papers published by June, have been devoted to this topic. “The amount of data that is coming at scientists, public health policymakers, politicians and others is at an unbelievable speed. And a huge part of the challenge is processing the data and trying to find out what makes sense and what doesn't,” Simon commented.

There are also undisputable positive impacts of this avalanche. One of them, Dr. Simon said, is the shift we have seen at traditional journals such as “The Lancet” or “New England Journal of Medicine,” that took steps to make research data available to the public by adjusting their paywalls. Second, across the world, we have seen a great deal of collaboration between scientists and health experts to tackle the pandemic.  Third, for the public good, we see scientists making their research results available to the public a lot faster.

There are trade-offs that come with these opportunities. The rush to defeat the pandemic may result in a tendency to lower ethical standards with potentially harmful impacts for society and for researchers who might find themselves sidetracked by research results which are later proven to be questionable. (Read a full interview on this topic on DOSI website).

“We have moral and ethical obligations to our research participants, both to respect their honesty and autonomy. This requires us to balance their rights and protections and facilitate their self-determination, while acknowledging that we now have a changing risk benefit ratio due to the pandemic,” said Jamie Roberts, Senior Staff Director, Clinical Research Networks. Roberts’ talk focused on communicating to research participants during the pandemic.

A novel role that research coordinators need to consider, Roberts said, is to address psychological needs of the research participants because of the pandemic: “Are there any tips that we could provide to help participants feel that they could stay connected to community and family? Or tips to encourage moderate information consumption without overexposure, to maintain their resiliency while sheltering in place?”

According to Roberts, the researcher’s responses to patients during the pandemic are opportunities to maintain and even enhance trust by addressing miscommunication or misinformation in lay language that research participants can comprehend. And an opportunity to inform study participants about what can they expect when coming back to the clinics for research visits – in term of equipment, hygiene and interaction with research staff?

Preserving and enhancing trust is a key reason for why researchers need to communicate the broader societal impacts of their research, said  Dr. Jory Weintraub, who continued the discussion. A senior lecturing fellow of the Duke Initiative of Science and Society and Director of the Duke Broader Impacts Resource Center,  Weintraub talked about the National Science Foundation’s research proposal evaluation criteria – intellectual merit and broader impacts. A great deal of his work at Duke is assisting researchers with the latter, defined as “benefits of the proposed research to society.” While NSF is the only federal funding agency in the United States requiring a broader impact section in research proposals, Weintraub anticipates a shifting trend in the coming years, given that “seven industrialized nations around the world have been doing this for a long time.“ Weintraub thinks that communicating the broader societal impacts to sponsors and the public (concept for which different countries use different terms, such as knowledge translation or knowledge mobilization) is an ethical obligation, beyond a criteria for funding,  to help preserve the public trust in science. “Anybody who's writing any sort of proposal for any sort of research, will have a more compelling proposal if the impacts of the research are addressed. I can work with you to think of ways to communicate the impacts of your research,” he offered.

Karl Bates, Director of Duke Research Communications, encouraged the research audience to completely re-think how they communicate science to the public.

“Everything you've been trained and acculturated to do in scientific discourse is pretty much antithetical to the way non-scientists like to communicate. There is a lot of social science research that shows that the deficit model – “where a scientist may think ’if I could just share with you all the facts, you'll agree’ – actually does not work. You cannot shove stuff into somebody's head until they agree with you. They're just not going to hear it.”

In other words, data does not speak for themselves, Bates emphasized. Scientists need to be their research data’s passionate, engaging and personable voice. He suggested researchers put a human face on what they’re saying by using narratives and anecdotes and sharing some of their own personality to better connect with the public.  In difficult times like the one we live in, reflecting of ethical standards or how to best communicate research and policy could be seen as less crucial. However, experts say that especially in difficult times like this, they matter most.

LINK to the slides

Link to the recording