From Epi to Advocacy: Part 2
Category : PROspective
In this second segment on translating epidemiologic work into advocacy efforts, Dr. Anke Huels follows up on her discussion of the importance of building interdisciplinary teams and engaging with stakeholders during the research process. In this piece, Dr. Huels provides advice from her experiences working with the Trisomy 21 Research Society’s COVID-19 task force on how to ensure that your findings reach the right audiences and promote change and accountability in real-time.
How do you reach the right audience to promote advocacy?
By Anke Huels (PhD, MSc)
1) Consider uploading your manuscript to a preprint server
When you submit your work to a peer-reviewed journal, it usually takes 3 months (very rare) to about a year from first submission to publication. And if you have to try more than one journal after it has been rejected by your first choice(s) (very common!), it can take even longer till it’s published. It took less than a year till we had several vaccines against COVID-19. Do we really want to wait for a year till we learn about the consequences of COVID-19 on individuals with Down syndrome? When the pandemic is over, no one would be interested in such a paper. Therefore, we decided to upload our manuscript to a preprint server at the same time as submitting it to a peer-reviewed journal. Our preprint already got some attention from the media. I was interviewed by Science Magazine about our study and shortly after the CDC included individuals with Down syndrome as high-risk group.
2) Choose the right journal
How do I reach the right audience? Who will be most interested in our research? Do I want other epidemiologists to read my work? Submit it to an epidemiological journal! Are the findings more interesting to a medical audience? Submit it to a medical journal! Another criterion (especially for time-sensitive work) is, how long it usually takes from submission to publication and if they offer open access. For our project, we decided to submit it to a general medicine journal with open access and published in The Lancet’s EClinicalMedicine.
3) Know your audience!
Scientific articles usually don’t reach the general public and caregivers of individuals with Down syndrome, who are the target group for the recommendations we were trying to bring across. Therefore, we decided to make our findings more accessible to the general public after it had been published in a peer-reviewed journal. We gave several interviews and the reporters did a great job in providing a lay summary of our findings in several newspapers, like USA Today and Verywell Health. In addition, we published regular updates of our findings on the T21RS website, including infographics that provided a brief and simply overview of our findings.
4) Advocacy efforts begin after publication
Partly based on our findings, governments from all over the world included Down syndrome as high-risk medical condition for severe COVID-19. Does that mean our job was done? Not really. Many states in the US decided to ignore the CDC recommendations and came up with their own list for prioritization. We were then asked to write a brief report for the Biden administration’s COVID-19 Health Equity Task Force about the progress in vaccinating individuals with Down syndrome. Lauren Russel, a 2nd year MPH student in Epidemiology, went through the states’ local public health websites and prepared a vaccine tracker which provided regular updates, in which states individuals with Down syndrome were eligible for vaccination. This vaccine tracker was distributed via the T21RS website, Twitter and various Down syndrome societies. And we gave interviews on the local news channels. In Georgia, Governor Kemp announced that individuals with Down syndrome would be included in the upcoming vaccination phase just two days after our interview on 11Alive. While this could have been a coincidence, I strongly believe that giving many interviews on different channels has made a big difference for our advocacy efforts.
5) Don’t be scared of interviews
I was extremely nervous before the first interviews (especially before the first TV interview), but it became much easier over time. I can strongly recommend using the available resources for media training! For me, it was extremely helpful to talk to the Rollins Communications experts before I gave my first interview. They even attended most of my interviews and gave me great feedback afterwards about what I could do better next time. Furthermore, interviews are a great way to practice science communication and explaining your findings to the general public. Another good way to practice your science communication skills, is to talk to your parents, grandparents or friends about your research – especially to those who have no background in epidemiology, medicine or public health. If you are able to convince them of the importance of your research and they can summarize your research in their own words, you did a good job in science communication!
6) Use Twitter to promote your research!
Twitter is a powerful platform to promote your research. We successfully used Twitter during all stages of our project: 1) To promote our survey, 2) To share our findings, 3) To advocate for individuals with Down syndrome being prioritized for vaccination, 4) To share information on which states were already vaccinating people with Down syndrome. Especially when you want to reach a broader audience, Twitter is a great platform to share your findings. Consider using Twitter threads to explain your main research findings in 4-5 tweets. Impossible to bring it down to such a small number of characters? That’s a sign that you need to work on your science communication skills! I see Twitter as a modern version of an Elevator Pitch. Giving a brief lay summary of your research needs practice but it’s an essential skill for science communication.
Overall, to translate your epidemiologic work into advocacy efforts, 1) it is essential to work in interdisciplinary teams to integrate different perspectives into your conclusions and recommendations, 2) practice your science communication skills so that you are able to communicate your findings to the general public, 3) promote your findings on social media and don’t be scared of giving interviews! Not every epidemiologic work can be translated into advocacy efforts. But take the opportunity to make a difference, whenever you have the chance to do so! That’s our responsibility as public health professionals!
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.