Increasing the influence of the Alzheimer’s research community in shaping the public narrative around AD interventions

Abstract

AbstractAfter decades of failure in AD drug development, recent approvals signal a shift. The information associated with a new drug approval is scientifically complex and inaccessible to the general public. Historically, clinical researchers publish in scientific journals and rely on clinicians to distribute this information to the public. But with approximately 86%1 of Americans getting news from digital sources, social media has a large influence on public opinion of scientific topics. This influence was seen during the COVID pandemic and with the aducanumab approval. Many of the loudest voices are not scientifically motivated and may have conflicts of interest. It’s important to provide scientific voices.Method: A literature search identified concerns with dissemination of scientific information through social media. Best practices are described for educating the public on scientific topics and building public trust in science. In this context, we evaluate the current transition being experienced in the Alzheimer’s field, and lessons learned over the past several years.Result: Critical issues are: the lack of quality control of results, the tendency to believe the loudest voices, and unreported conflicts of interest. Due to the many failures in the Alzheimer’s field, many are vocal critics all AD data and the tendency is to maintain this negative approach. Many of the social media voices in the Alzheimer’s space have not been involved in AD research and may misrepresent results.Scientist Veerasathpurush Allareddy observed “On social media, scientists have to be clear and succinct, an incentive to eliminate jargon and streamline the message.”3Conclusion: As a field of AD researchers, we have an imperative to help shape the discussion around treatments in Alzheimer’s disease with clear, accurate and usable information. We can also encourage people in our communities to help us spread accurate scientific information as it becomes available to our research community.1. “More than eight‐in‐ten Americans get news from digital devices” https://www.pewresearch.org/fact‐tank/2021/01/12/more‐than‐eight‐in‐ten‐americans‐get‐news‐from‐digital‐devices/2. Huber B, Barnidge M, Gil de Zuniga H, Liu James. “Fostering public trust in science: The role of social media. https://www.researchgate.net/publication/335652963_Fostering_public_trust_in_science_The_role_of_social_mediaSCIENCE “Social media: Good or evil?” 10 Feb 2022 Vol 375, Issue 6581 pp. 608‐609 https://doi.org/10.1126/science.abo2409