From Epi to Advocacy: Part 1

In this first of two segments on using epidemiologic research to power health advocacy efforts, Dr. Anke Huels discusses the importance of working with interdisciplinary teams and engaging with stakeholders to create recommendations that are actionable and relevant to affected communities during her work with the Trisomy 21 Research Society’s COVID-19 task force. 

How do you translate epidemiologic work into advocacy efforts?

By Anke Huels (PhD, MSc)

Let’s be honest: How many of our epidemiologic research projects have a direct impact on public health? When I review my own research from previous years, I would say not that many. Don’t get me wrong. Some projects we work on make a difference in our specific fields of research. But we usually don’t expect the general public to be interested in our research findings and we don’t expect them to have a direct impact on political decisions.

At the beginning of the COVID-19 pandemic, I joined the Trisomy 21 Research Society (T21RS) COVID-19 task force as expert for biostatistics and epidemiology. Health conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome) were hypothesized to impact the clinical course of COVID-19. Our goal was to better understand the impact of COVID-19 on individuals with Down syndrome and to find out whether they are more vulnerable to severe COVID-19 than the general population.

Get out of your comfort zone and work in interdisciplinary teams!

If you discuss your epidemiologic findings only with other epidemiologists, it is very unlikely that you will reach the general public and decision makers. You can conduct a perfect epidemiologic analysis and write a beautiful research article. However, if you want your work to make a difference, you need to discuss it with people from different fields and have a good answer to the question “so what?”. As epidemiologists, we are trained to cautiously discuss all limitations of our analysis and often told to avoid stating any policy recommendations based on our findings. But what if our study is by far the largest study that has ever been conducted on this topic, and the community and policy makers are begging for information and advice?

Our study on the impact of COVID-19 on individuals with Down syndrome was based on more than 1,000 COVID-19 patients with Down syndrome from all over the world. Most previous studies were case reports of less than 10 COVID-19 patients with Down syndrome. Most importantly, the Down syndrome community was begging us for information about how dangerous COVID-19 is for individuals with Down syndrome and recommendations on what they could do to protect them in the best possible way. The other members of the T21RS task force were clinicians from all over the world – most of them with limited knowledge of epidemiology but an excellent understanding of the medical conditions and the kind of questions and worries patients (and their caregivers) had. Consequently, it was a continuous back and forth within the task force until we agreed on the conclusions we could draw from our data and which questions we could not answer.

In addition, we had regular stakeholder meetings with members of various Down syndrome advocacy initiatives and societies. During the stakeholder meetings, we shared our epidemiologic results and discussed the best ways of communicating them. In our study, we found that individuals with Down syndrome have a three-fold increased risk for mortality after infection compared to the general population. But what are the consequences of these findings? Does that mean that individuals with Down syndrome should be shielded? What about the adverse impact of having to stop the therapies and care they need and losing their daily routine? What about children with Down syndrome? What happens if parents of children with Down syndrome panic after reading our findings and take their kids out of their daily routine? It was clear that we could not simply report or findings without discussing their impact on the Down syndrome community. Therefore, it was crucial to have on-going discussions with clinicians and stakeholders to find the right balance between reporting our results and being clear about their implications.

Stay tuned for next week’s segment where Dr. Huels will discuss specific strategies for disseminating research in a timely and effective manner, and connecting the findings to direct advocacy efforts!

Dr. Anke Huels (PhD, MSc) is an Assistant Professor in the Department of Epidemiology, with a joint appointment in the Department of Environmental Health. To learn about Dr. Huels’ ongoing projects, visit her website to hear more about the current work in the Huels Lab.