55 Lessons Learned About Science Communication Around the World During COVID-19
The following insights, contributed by members of the Aspen Global Congress on Scientific Thinking & Action, offer local experts' best practices for communicating about a global health crisis with the public in nuanced and regionally specific ways.
Senegal
Is the messenger as important as the message? Pandemics such as COVID-19 and the flood of online misinformation underlie the critical need to elevate the voices of African science leaders. African communities have talented experts they can rely on to access reliable information based on facts, if only the right platforms are provided to them. Not only do we need to share the right information and understand our target audiences, we must pay close attention to those who deliver our messages, when planning any communication strategies.
Fara Ndiaye, Deputy Executive Director, Speak Up Africa
Brazil
The first lesson from the current pandemic for science communication in Brazil is that there is no such thing as redundancy. It doesn't matter how many times one says or explains something—about the importance of social distancing, or the uselessness of chloroquine—there is always someone you didn't reach the first time, and someone you reached but wasn't paying attention then. You have to repeat it, over and over again. Another lesson is that it actually works. Sometimes the onslaught of misinformation can make one think that the effort is futile. It isn't: if you listen carefully, you can find the results—even if only after a lot of repetition.
Natália Pasternak Taschner, President, Instituto Questão de Ciência (Question of Science Institute)
Carlos Orsi, Editor-in-Chief, Questão de Ciência (Question of Science) Magazine
Colombia
The pandemic has exposed the strengths and weaknesses of journalism, but it is also teaching, in real time, how to do good scientific journalism. In Colombia we have good results with the strengthening of our collaborative networks and working with colleagues from other countries and other media. We listen to science and give it a voice in the media. We are also looking at information from different angles. But we are left with challenges: journalists must be trained in scientific journalism, scientific journalism needs to be across all journalistic areas, and we need to learn to rigorously fact-check.
Ximena Serrano Gil, President, Asociación Colombiana de Periodismo Científico (Colombian Association of Science Journalists)
Ukraine
Ukraine started quarantine on March 25, 2020 when there were only 10 cases of COVID-19. And already on May 22 the quarantine was weakened and economic recovery began. Kyiv Mayor Vitali Klitschko's address "Don't wander the streets" worked well in the capital, the most populated city. We also managed to develop our own PCR tests within two weeks. I managed to provide comments on the origins of the new strain of coronavirus to the leaders of public opinion and it helped to prevent conspiracy theories and to stop the panic. Aspen Institute Kyiv organized a series of online events and activities to inform society about the pandemic, to help with medical supplies, and to assist the needy. In general, the COVID-19 pandemic exposed all the shortcomings and bottlenecks of the country's medical sphere. The positive outcome is that everybody learned about PCR and realized how important good science is for society.
Nataliya Shulga, CEO, Ukrainian Science Club
New Zealand
This pandemic has highlighted how a scientific issue connects every discipline and when those from seemingly different camps work collaboratively and innovatively, a powerful alchemy can result. I think New Zealand's response to COVID-19 has shown what is possible when good science and good communication come together. We have had extraordinary leadership in this country that not only invests in science, but invests equally in the public's understanding of it. NZ citizens were brought into the process of it every single day through effective storytelling across multiple platforms. Walls between science and society melted away, and no one had to question the reasons behind what we were being asked to do to protect ourselves and each other because the science was embedded in a crystal clear story. And at the heart of that story is the message to trust in science like your life depends on it—because it does.
Gianna Savoie, Director of Filmmaking, Center for Science Communication, University of Otago
Portugal
COMCEPT tries to engage with the public in person and via digital social networks. In the week before the lockdown we organized a public meeting, some style of "Skeptics in the Pub," about the new coronavirus. The speaker was the president of a medical association and presented to the public the best data available at the moment regarding SARS-CoV-2 and COVID-19. During the lockdown, we used social media to promote reliable information about the disease, shared official data from the Government, asked the public to participate in online academic studies, and debunked conspiracy theories.
João Lourenço Monteiro, Vice President, COMCEPT: Comunidade Céptica Portuguesa (Portuguese Skeptical Community)
Australia
Australia has … so far … come through the coronavirus pandemic without suffering the appalling figures seen elsewhere: Australia's death rate per million currently stands at 4, compared with 300 deaths per million in the U.S.A.; 542 in the UK; and a horrifying 800+ in Belgium. Australia is not alone in achieving such relatively low figures, but in Australia it does seem to be thanks to a fairly (but not perfect) early intervention to stop infections through border controls and lockdowns, supported by a largely cooperative public. While early communication efforts by governments were marked by contradictions and confusion, one success has been the national broadcaster, the Australian Broadcasting Corporation, in spreading factual information through a range of media platforms. In particular are the activities of Norman Swan, presenter of ABC Radio National's Health Report, who has become a key voice of coronavirus information. His daily CoronaCast podcast quickly became one of the most downloaded science podcasts around the world, and though presentations were not without dire predictions, his softly-spoken manner generally gave science communication a voice that seemed sincere and proved reliable.
Tim Mendham, Executive Officer, Australian Skeptics
Israel
There are two salient features of the corona-related fake news in Israel: they give the reader meaning and hope. I think that if we talk more about the interface between science and moral values, we might be able to fill in the needs currently filled with prophetic, pseudo-medical, and conspiracy messages. When communicating science, a curve is not just a curve; it is also a story about solidarity.
Ayelet Baram-Tsabari, Associate Professor,Faculty of Education in Science and Technology, Technion – Israel Institute of Technology
Nigeria
COVID-19 has exposed the need to diversify the approaches and languages used to communicate science. In Science Communication Hub Nigeria and African Science Literacy Network, our scientists and fellows are using local languages to debunk science misconceptions and disinformation about COVID-19 through written articles, myth busters, and weekly webinars streamed live on Facebook and YouTube. In addition to disseminating good science, this approach has made it easier for us to understand how local communities view science and scientists, which in turn enables us to deliver content appropriate to these communities.
Mahmoud Bukar Maina, Founder, Science Communication Hub Nigeria
Czech Republic
It is not a secret in the world of science communication that, for many, accepting the facts has little to do with facts themselves. This quiet truth has been brought out into the spotlight even more so now during the pandemic. Many of us received the lesson that we must communicate with the human first before we try communicating the science to them.
Claire Klingenberg, President, European Council of Skeptical Organizations (ECSO)
U.S.A. / Mexico
The pandemic has united science communicators more than ever. It has spurred many fruitful collaborations, such as the COVID-19 Virtual Forum organized by the Mexican Network of Science Journalists with all the science communication associations in Latin America and Spain. In Mexico and the U.S., we are all fighting misinformation while keeping up to date with the freshest science, policies, and society's response. This is the time to show why science journalism is important by stepping up to the plate.
Rodrigo Pérez Ortega, Founding Member, Mexican Network of Science Journalists
Switzerland
Switzerland has managed to flatten the curve substantially and avoid a collapse of the public health system. Now that the country is slowly opening up again, the public discourse increasingly revolves around the question of "what was all this fuss about, when nothing happened?!" We have a term for this frustrating phenomenon: Pandemic Paradox. The successful management of outbreaks can lead to a decrease in public trust in communicators based on the perception that they were overreacting. However, we are aware of it and its origins are well studied, which gives us an assortment of tools to combat it.
Angela Bearth, Research Scientist, Consumer Behavior, Department of Health Sciences and Technology, ETH Zürich
Cameroon
The pandemic has recalled the vital role of science communication in times of crisis. Africa in general and Cameroon in particular have been spared for the moment from the catastrophe so feared by the whole world. This stems from the good collaboration among media, decision makers, and researchers who have positively influenced the apprehension of the threats by the general public as well as their behavior, which is a determining factor for the efficiency of the response.
Stéphane Kenmoe, Scientist, Science communicator, and television personality
Canada
Science communication is always challenging but even more so in the COVID-19 era since so much about the disease is unknown. Because of my media presence and the mandate of our Office to "demystify science for the public," I am bombarded by questions from morning to night. Unfortunately, the answers almost always have to be qualified with "ifs," "buts," and "maybes," which is not very satisfying.
I think I can confidently say that self pleasuring will not reduce the chance of contracting COVID-19 as some bloggers claim, and I can also assure people that hanging laundry on a clothesline is safe and advise them that putting the newspaper in the oven to disinfect it is a bad idea. But when questions arise about handling mail or groceries, or the effectiveness of masks, the uncertainties creep in.
Then there is the issue of the numerous conspiracy theories ranging from Bill Gates's supposed plan to decimate the population to the disease being caused by 5G antennae. This puts us in a position of having to prove a negative, which is very difficult to do. My usual approach is to ask proponents questions about the number of conspirators that would have to be involved, their possible motives and the source of the information. Sometimes if you give them the rope they will hang themselves.
Joe Schwarcz, Director, Office for Science and Society, McGill University
India
The clamp downs, the lock downs,
the prayers were all tried
Lamps were lit, plates banged, and
flowers were showered from skies
Millions were spent, sugar pills were
dispensed, grandmas' soups concocted
Herbs were boiled and breathing taught
Alas nothing worked, they all came to
naught
Millions walked, hundreds died.
All nation builders migrating to home
villages
The rulers were deaf, the nation was
blind to one of the longest shut downs
of its kind!
But nothing worked, neither the herbs
nor the sugar pills or the urine of the
mother cow!
1,300 million Indians abandoned to their fate now!
Narendra Nayak, President, Federation of Indian Rationalist Associations
U.K. / China
COVID-19 has brought the public to witness first-hand science-in-the-making in a multi-centred world and allowed the scientific community to participate in real-time sense-making with various publics on risks and responsibilities. To borrow the term from Silvio Funtowicz, COVID-19 has ushered everyone into an era of "post-normal" science communication, in which the contents being communicated are contingent, objectives conflictual, outreach global, consequences personal, and (re)actions urgent. This further highlights the need to co-develop new approaches of transnational scientific dialogue in and with China, where public engagement is still at a nascent stage.
Joy Yueyue Zhang, Senior Lecturer in Sociology, School of Social Policy, Sociology, and Social Research, University of Kent
U.S.A.
I'm inspired by the work of Avi Schiffmann, a 17-year-old high school student in Seattle, Washington, who took it upon himself to create a well-designed and up-to-do-date website for tracking COVID-19 infections and deaths from around the world. Remember when the outbreak first happened and no one could get reliable information in one place? This kid—who had been coding since he was a child—created a massive data-scraping program that allowed a centralized location for this crucial info. And it's gotten millions of views. Now that's science communication!
Lee McIntyre, Research Fellow, Center for Philosophy and History of Science, Boston University
Syria
In Syria, the COVID-19 situation is messy and unclear and lacks transparency. From one side, official numbers show only 109 cases and four deaths since the outbreak; on the other side, these numbers are widely criticized by experts as well as by the public because of low testing and lack of official communication.
The nine-year-long war has hugely destroyed the medical infrastructure in Syria and pushed the majority of medical staff to leave the country. Despite these facts, the country went into only a partial lockdown and tried to minimize interactions among its population with shy measures.
The big absence in these measures was indeed "communication." None or only a few official institutions tried to keep the population updated about the evolution of the disease inside the country. This factor pushed many civil society organizations to take over, covering topics such as self-protection, molecular biology, and pharmaceutical updates. Moreover these initiatives, mainly via Facebook, fought against misleading information such as conspiracy theories and unethical drug use. In the near future, international organizations should learn from the Syrian example and pay more attention to the impact of these volunteer-based organizations that could replace official institutions for science communication during wartime.
Mouhannad Malek, Founder and Chairman, Syrian Researchers
Spain
From the skeptical movement, we noticed that at first almost everybody was very cautious, and few dared to screw it up with loose nonsense. But right away, some started placing the blame on their favorite enemy: Trump on China, China on Trump, or electromagnetic or 5G sensitivity—allied to the anti-vaccination, flat-earth, and Germanic New Medicine leagues. And then there are the crazy remedies pulled out of a hat.
Juan A. Rodríguez, Secretary, ARP–Sociedad para el Avance del Pensamiento Crítico (Society for the Advancement of Critical Thinking); Editor, El Escéptico (The Skeptic) magazine
Argentina / Brazil
Science communication and journalism have been reinvented in South America. More people are giving their time to contribute to science communication and are also actively engaged in teaching society how to be fact-checkers. Science popularization was reborn in small movements that spread checked news that "goes viral" through WhatsApp messages where, until then, Fake News had a clear ground. Low-cost podcasts boomed, shared sometimes even in the old way, through car loudspeakers in the street. Journalists, science communicators, and researchers became more active in professional networks. They also abandoned the practice of competing against each other, creating new ways to collaborate. Now, they share hard-to-access data through virtual meetings, pre-prints, or private communication, offering experts' contacts and valuable advice. This is the new normal.
Roxana Tabakman, Health Writer and Science Journalist, Red Argentina de Periodismo Científico (RADPC) (Argentinian Network of Science Journalism); Rede Brasileira de Jornalistas e Comunicadores de Ciência (RedeComCiência) (Brazilian Network of Science Journalists and Communicators)
Japan
In Japan, the lack of outreach from scientists and science communicators during the Fukushima nuclear power plant accident following the Great East Japan Earthquake in 2011 led to a growing distrust of science professionals. In this year's COVID-19 pandemic, many scientists are disseminating information online, and science communicators at research institutions are actively providing learning tools for children who are on standby at home. While politicians have yet to learn the importance of science communication, the public is learning how to seek out the information they need.
Masataka Watanabe, President, Japanese Association for Science Communication
Jordan
In these unprecedented times, building the case for science and research is of utmost priority. Therefore, at Phi Science Institute in Jordan, we aim to handle this responsibility very seriously on the regional and global levels by providing full coverage of the latest trusted scientific news in Arabic for the Arab world; turning our Research and Innovation Summit 2020 fully virtual to connect youth and experts for science from all across the region and enable them to work on joint research projects at this hard but unique time; and working with our artificial intelligence lab on healthcare A.I. products related to COVID-19.
Safa Khalaf, Community Outreach Officer, Phi Science Institute
U.S.A.
Initial response to the outbreak in the U.S. was striking for the high degree of support for and compliance with restrictions on public activity. Scientists were centerstage in their role advising government leaders. But U.S. opinion has been shifting. There are now growing partisan divisions over the risk COVID-19 poses to public health as well as over social distancing measures aimed at slowing the spread of the disease. And, unlike years past, a partisan imprint now extends to public confidence in medical scientists to act in the public interest.
Cary Funk, Director, Science and Society Research, Pew Research Center
Romania
Governments all over the world have realized the importance of good communication with the public. And they have also realized the impact that false news and misinformation can have on their efforts. I work in promoting vaccination, and until now, antivaccine ideas were considered fringe and limited. The pandemic has shown that anyone can start to become a source of misinformation, and we need to combat misinformation quickly and efficiently. This lesson, hopefully, will not be forgotten.
Ovidiu Covaciu, Administrator, Vaccinuri si Vaccinare (Vaccines and Vaccinations); Founder, Coaliția România Sănătoasă (Romania Healthy Coalition); Producer, Sceptici în România (Skeptics in Romania)
Russia
Just a year ago, we launched a specialty in communication in medicine and biotechnology in our SciComm M.Sc. program. It's been a long time coming! Like never before, we are facing the fact that science communication matters, and the lack of information only increases fears and frustrations.
Daria Denisova, Director, Science Communication and Outreach Office, ITMO University
South Africa
Novel ways of sharing the science of COVID-19 with children: In South Africa (and many other countries) scientists have partnered with authors and illustrators to create a range of storybooks, comics, and infographics (in many indigenous languages) to help children understand the pandemic.
The pandemic is also an infodemic: As much as there is a need (and demand) for scientific expertise, misinformation may also flourish when people are scared and uncertain. Combating misinformation is a complex task. It is important to understand the reasons why rumours and false claims spread, and to be thoughtful and respectful when trying to correct them. Here is some advice.
Marina Joubert, Senior Researcher, Centre for Research on Evaluation, Science and Technology (CREST), Stellenbosch University
U.K.
As a researcher of so-called alternative medicine (SCAM), I should have expected it—but when it did arrive, it came as a surprise nonetheless. I am talking about the number of snake-oil salesmen putting their ugly heads above the parapet. After the pandemic had been declared, it took just days for the promotion of corona quackery to start: acupuncture, chiropractic, herbal tinctures, homeopathic remedies, colloidal silver, essential oils, dietary supplements, and many more. The entire panopticum of SCAM was on display. This was when I decided to relentlessly name and shame the villains on my blog (edzardernst.com). Today, I must have posted over 40 articles about the "corona snake-oil brigade."
The second surprise was positive, I am glad to say. The amount of support I received was unprecedented. Hundreds of comments were posted by people who agreed that now it was more important than ever to disclose this quackery, point out what harm it does, and prevent the public from falling for it (at one stage, my humble blog was even quoted by U.S.A. Today). Many friends and colleagues joined in and wrote about SCAM merchants attempting to make a fast buck by misleading the public. But the public was far less gullible than the charlatans had hoped. My impression is that the snake-oil craze even provided a significant boost for critical thinking. The pandemic is doing untold, tragic damage, but it has also helps to explain to consumers how crucially important real science is and how devastatingly dangerous pseudoscience can be.
Edzard Ernst, Emeritus Professor, University of Exeter
"How can we sustain this appetite for science? Highlight the WHY more than the HOW and WHAT."
Pakistan
Pakistan is actively combating the COVID-19 pandemic by effective lockdowns. People are well aware of mask and sanitizer usage and are maintaining social distancing. Treatment of those affected is being provided by government hospitals.
Qaiser Majeed Malik, Chairman, Pakistan Science Foundation
Turkey
Despite strong faith in fatalism in Turkish society, trust and confidence in sciences have unexpectedly increased since the outbreak of COVID-19. Discussion programs on TV give their prime times to scientists more than governmental authorities. The Ministry of Health got more credit than any other political actors because of its daily updates on prevention arrangements. However, social media is more useful to share information about people's corona experiences in their living environments. Personal impressions and experiences are widely circulated during the outbreak, including health conditions and daily life routines under the "stay at home" conditions. Scientific content about COVID-19 is also heavily distributed, and governmental practices are called into question by social media users frequently. Individuals become more "science citizens" both by demanding scientific information from diverse and trustworthy sources and also by producing their own content.
Çiler Dursun, Professor, Faculty of Communication, Ankara University, Scientific Coordinator, Genovate
Malaysia
A lesson I learned during the pandemic as a science communicator: it takes a crisis for the public to heed science and see it as a solution provider. Followers on my Facebook page increased by more than 2,000; subscription to my newspaper, The Petri Dish, increased among the public; and more media interviews. How can we sustain this appetite for science? Highlight the WHY more than the HOW and WHAT.
Mahaletchumy Arujanan, Executive Director, Malaysian Biotechnology Information Centre (MABIC)
Germany
The brief guide on Proper Criticism by psychology professor Ray Hyman has been crucial for effective science communication, where he explains essential points, such as not going beyond your level of competence and using the principle of charity. Beyond presenting the facts and the science, which are often later forgotten by the audience, people remember the messenger. We have learned that coming across as compassionate, credible and trustworthy gives the message a far more significant and lasting impact.
Amardeo Sarma, Chair, Gesellschaft zur wissenschaftlichen Untersuchung von Parawissenschaften (Society for the Scientific Investigation of Parasciences)
Netherlands
In the early phase of the pandemic in the Netherlands, the government opted for a moderately strict lockdown and suggested that in this way the virus that was still present would lead to herd immunity. There was massive outrage because the public understood that civilians were being sacrificed for the creation of this herd immunity. When the government subsequently explained that the creation of herd immunity was not the goal of its policy but a welcome side effect, the unrest subsided.
Cees Renckens, Chair, Vereniging tegen de Kwaksalverij (Dutch Society Against Quackery)
Rwanda
At the University of Global Health Equity (UGHE), we have worked to further our educational mission during this unprecedented challenge of COVID-19, a pandemic that reminds us of the critical importance of our mission. With our campus located in the rural north of Rwanda, it was our priority to not only continue to provide quality education—which has transitioned to fully virtual learning—but also to take extensive precautions to protect our students, staff, faculty, and the surrounding community from the virus. Given the toll of this virus and the drastic change in social norms it has created, we are conducting not only weekly physical screenings but also mental health screenings. We are grateful to report that all from our UGHE community have remained in strong health. We are grateful to keep contributing to the fight for global health equity during a time such as this.
Agnes Binagwaho, Vice Chancellor, University of Global Health Equity; former Minister of Health
U.S.A.
The pandemic has revealed that now more than ever, science communication cannot prevail until nations and states dismantle the underlying structural injustices that erode trust in science. For instance, the exploitation of racial minorities' justified distrust of the medical establishment by anti-vaccine groups has become a matter of growing concern—from the 2017 Minnesota measles outbreak after activists convinced Somali-American immigrants that vaccines cause autism to the growing present-day opposition to a COVID-19 vaccine. Still, there is hope if only those who disseminate science-based information understand that the anti-vaccine movement, and similar movements that sit at the crossroads of science and society, have never been fundamentally about evidence. It's about whom to trust.
Kavin Senapathy, Science, health, and parenting writer; Member, American Society of Journalists and Authors; Contributing Editor, SciMoms.com
Indonesia
Although the clerics all agreed that public prayer should be banned to slow the spread of the disease, many Indonesian Muslims clogged the mosque during Ramadan and Eid, completely ignoring the health and religious authorities. Some Indonesian Muslims even strongly believe that somehow the Jewish and the Chinese are the masterminds of the pandemic—a bizarre claim that Muhammadiyah, one of the largest Muslim organizations, is trying hard to debunk. Conspiracy-theory believers are still not completely convinced by counter-arguments coming from religious authorities.
Rizqy Amelia Zein, Assistant Professor, Department of Personality and Social Psychology, Universitas Airlangga
U.S.A.
I practice Stoic philosophy and have been wondering what the Stoics might have to say about how to react to a pandemic. It struck me that our current situation is somewhat analogous to something many in the ancient world had to experience: exile. When someone is in exile, their life is very different, of lower quality, and far more constrained, than what they are used to. Just like during self-isolation or lockdown in a pandemic.
So what did the Stoics do when in exile? They taught philosophy to others, like Musonius Rufus, a famous first-century teacher. And they wrote letters of consolation to their loved ones, as Seneca, also in the first century, did to his mother Helvia.
In that letter, Seneca says that Fortune comes and goes, but what remains constant, and independent of Fortune, is our character, our determination to always be the best human beings we can be. Indeed, it is in times of difficulties and setbacks that we have an opportunity to shine. As he puts it, everyone is a good pilot when the sea is calm. It's only in the midst of a storm that we see who is truly skilled. So let's think of the current storm as an opportunity to improve our proficiency at navigating life.
Massimo Pigliucci, Professor of Philosophy, City College and the Graduate Center, City University of New York
Morocco
Our communication efforts have included webinars on the environment, climate change, and inter-linkages with the pandemic, for example effects of coronavirus on biodiversity, how COVID-19 has benefitted climate, and the green economic recovery from COVID-19. Our members have also written opinion articles published in journals and media in more than ten Arab countries. These activities have attracted the attention of communities, raised awareness as the scientific material was communicated in the Arabic language, and significantly unleashed the potential of our members.
Hajar Khamlichi, President and Co-Founder, Mediterranean Youth Climate Network; Board Member, Moroccan Alliance for Climate and Sustainable Development
Iran
Iran was one of the first countries to be involved in the crisis. Widespread international sanctions have restricted the capability to control the virus. In response to the pandemic, scientific institutions, non-governmental organizations, and government agencies have facilitated the transition from this crisis by:
Akram Ghadimi, Associate Professor, Department of Popularization of Science, National Research Institute for Science Policy
Philippines
Here in the Philippines, government agencies regularly post pandemic-related visual aids through social media in order to prove a point (e.g., "The curve is flattening," "We have more or fewer cases"), except the visual aids are unintuitive, if not altogether cherry-picked: Trend lines are traced haphazardly, bar charts are not drawn to scale, and government spokespersons almost literally tell people what to believe. Instead of just mocking these visual aids, younger data scientists and statisticians have taken to social media to talk about how to interpret data and why some visual aids are badly made. These scientists use these social media posts as a starting point to help people think critically rather than accept knowledge wholesale, which fits well with how the practice of science is about questioning, critical thinking, and healthy skepticism.
Inez Ponce de Leon, Assistant Professor, Department of Communication, Ateneo de Manila University
U.S.A. / Colombia
Seven years ago, I wrote a book in Spanish called Un enemigo invisible / An Invisible Enemy. This science and adventure novel for young adults is read in several schools throughout Colombia. The plot deals with a deadly virus that gets into Miami via a howler monkey brought from Guyana in a shipment of wild monkeys for lab research. The monkey is a reservoir (whose original host is a bat) of the (fictitious) virus Canzanboria, which infects one of the young main characters. The book thus becomes a race to find out what this virus is, where it comes from, how to get a vaccine, and how to stop it—like what is happening now.
The exciting part is that, because of the pandemic, several schools are hosting videoconferences where I can talk to kids about the book and my behind-the-scenes work with real-life virus hunters—research I did in order to write the novel. These kids are hugely interested and love my explanations about the evolution of viruses, the roles they play in our life, and the fact that were it not for a virus, none of us mammals would exist.
This pandemic has opened a window for me to take the scientific process to young minds in often inaccessible places in Colombia, as well as in China (the book was translated into Mandarin). I think reaching young people is the way to achieve a well-educated and interested society that will eventually grow up to support science in a meaningful way.
Ángela Posada-Swafford, Science, environment, and exploration journalist, lecturer, moderator, and book author; Board Member, Colombian Association of Science Journalists
Ghana
Shortly after the first case was reported, various professional science societies and associations came together to form a COVID response team. The purpose was simple: to coordinate availability of scientists for media engagements. It worked well and continues to do so, making sure that people remain informed based on accurate science. It has been a lesson on coming together and communicating science collaboratively.
Thomas Tagoe, Lecturer, Physiology and Pharmacology, University of Ghana; Co-Founder, GhScientific
Nepal
In order to control the rate of proliferation of COVID-19, social distancing has been a globally accepted effective method. In order to maintain such distancing and yet continue our business as usual, information and communication technology available today is very much useful. Also, mobile technology has been easily accessible even to people living in poverty in Nepal. Therefore, we can take the widespread use of internet platforms such as Skype, Facebook, Zoom, MS Teams, Voov, WhatsApp, Kakao, Viber, WeChat, etc. for any kind of communication including for science teaching, seminars, conferences, meetings, and discussions.
Sunil Babu Shrestha, Vice-Chancellor, Nepal Academy of Science and Technology (NAST)
"During this pandemic, perhaps most confusing of all has been the unexpected ideological struggle on the fundamentals of medicine."
Sudan
When it comes to disseminating scientific information, social media can do more harm than good in a time of crisis, due to the spread of inaccurate scientific information. In Sudan, a country that is fighting the spread of COVID-19 with little to almost no resources, WhatsApp, as usual, became the main source of news about the virus for the majority of internet users. Sudanese people's phones are flooded with misinformation, including unverified home remedies (the most viral one was drinking red tea before sunrise), fake research findings that the virus cannot survive the country's climate, and conspiracy theories claiming that the virus is a lie made up by the government to close down mosques and stop people from practicing their religion freely.
All this misinformation has led to people not following recommended policies, such as non-essential travel and social distancing. In fact, it has made some people go as far as protesting in huge numbers against the government's decision to close down the borders. In areas where access to smartphones is limited, the few people who do have smartphones end up being the main source of information for the rest.
The low level of tech literacy in many developing countries, especially among elderly communities, makes people less likely to verify sources. With the continuous increase of COVID-19 cases, misinformation will pose an even more dangerous threat for many countries. Some, like Qatar and Saudi Arabia, have criminalized its spread, but implementing such strict policies isn't always possible. This is why I believe youth- and community-led initiatives in countries like Sudan can take a leading role in raising awareness about the dangers of misinformation. People here have little trust in government but are welcoming of youth work.
Lina Yassin, Programme Manager, Climate Tracker, MENA (Middle East and North Africa)
Guatemala / U.S.A.
At the Cornell Alliance for Science, we are currently highlighting how science is being used to fight COVID-19 and dispelling myths through our online platform. In Guatemala, there have been different spaces created for "science innovation" to address the challenges this pandemic brings with communication strategies that include hashtags such as #nuestrascienciarespone (our science has answers) and #cienciaGTenaccion [GT (Guatemala) science in action]. However, there is also a lot of misinformation spread through the many social media platforms used in the country. We believe we can amplify projects that bring attention to how science is pivotal in a crisis and, at the same time, dispel misinformation by circulating fact-checked pieces in Spanish for our Central American audiences.
Pablo Ivan Orozco, Policy Affairs Associate, Cornell Alliance for Science
France
During this pandemic, perhaps most confusing of all has been the unexpected ideological struggle on the fundamentals of medicine. While evidence-based medicine was demonstrating its power, a discourse combining postmodernism and medieval thinking was developing "against the method," celebrating "common sense" medicine as opposed to medicine presented as big data and big pharma.
France found itself, with its "Marseille Protocol" at the center of this tornado whose effects were felt as far as the U.S.A.–Brazil axis. At the heart of the turmoil, the French Association for Scientific Information has endeavoured to communicate daily on its public website and its internal forum the reliable sources of information enabling everyone to untangle scientific facts from unfounded rumours, to understand where the established knowledge is and where the uncertainties lie, and to remind people that medicine is not a game of poker.
Michel Naud, Director and Former President, Association Française pour l'Information Scientifique (French Association for Scientific Information)
Serbia
During the COVID-19 pandemic, the Center for the Promotion of Science was active in raising citizens' awareness of the challenges they faced. Very early on, at the end of March, the Serbian translation of the extensive database was published on the Center's portal, enabling citizens to find out what is really behind the often confusing statistics that the media conveyed to the public in a clumsy and sometimes distorted manner. In early June, a new issue of the Center's popular science magazine Elementi was released. In a special segment containing six articles accompanied by appropriate visual storytelling, eminent physicians, philosophers, data scientists, science journalists, and graphic designers addressed some important topics related to the pandemic, such as the evolution of SARS-CoV-2, data modeling, mental health of physicians and citizens, and the moral challenges with which decision-makers were faced.
Ivan Umelji, Head of the Department for Publishing and Media Production, Centar za Promociju Nauke (Center for the Promotion of Science)
Marko Krstić, Acting Director, Centar za Promociju Nauke (Center for the Promotion of Science)
U.S.A. / U.K.
At Annual Reviews, we removed access control to all of our content—everything that we have published in the past 88 years—on March 13, 2020 in response to the COVID-19 pandemic. Compared to April 2019, usage of the content in April 2020 increased more than threefold (to 3.1 million downloads worldwide). It was not just our virology and public-health related content that was read more—every field from astronomy to vision science saw a substantial uptick. Removing barriers to access reveals the breadth interest in science for the public good: in the U.S., 28 different city governments, 18 state governments, the U.S. Department of Justice, the U.S. Senate, and the U.S. House of Representatives all recorded usage, as did parliaments in scores of other countries.
Strikingly, access from less wealthy nations rose dramatically; for example, Morocco by 1,403 percent and Ecuador by 1,033 percent. This usage re-emphasizes the value of democratizing access to science across all disciplines (not just COVID-19) and parts of the world.
While the great majority appreciate their personal and public duty to reduce the chance of infection, in the face of weeks of isolation and economic hardship, many people experience angst, anger, and disbelief. Using science to help people understand the dissonances that they were experiencing, and the necessity of their sacrifice, we developed a free service called Pandemic Life as a way to relate the body of social science research to the COVID-19 pandemic. Several times a week, articles that offer insights into such matters as the benefits of social norms, how to guide children's development, dealing with isolation, and the nature of happiness are covered on social media and in a short news story, and the relevant review article is made available for a deeper dive.
This evolved into a series of online conversations called Pandemic Live, during which some of the world's foremost researchers discuss and answer questions on aspects of the pandemic. Directly connecting the public with researchers in ways that go beyond sound bites and political posturing provides a powerful way to communicate reliable science insights into health, social, and economic issues in an age of misinformation.
Richard Gallagher, President & Editor-in-Chief, Annual Reviews, Publisher, Knowable Magazine
Russia
The experience of the South Korean church spreading coronavirus has not taught us—in Russia—anything. There have been large masses of people standing in line in the Kazan Cathedral to kiss the remains of a dead saint. A number of Russian Orthodox priests have commented that you cannot catch a virus in church. The head of church public communications has stated that people should avoid massive gatherings—but religious gatherings are an exception. In the Vatican, Pope Francis was a welcome contrast, giving Easter mass behind closed doors and praying in an empty St. Peter's Square, showing by example the distancing and isolation to which we must adhere in order to save lives. Unfortunately, the Russian Orthodox church does not have such concerns for the people.
Alexander Panchin, Senior Researcher, Institute for Information Transmission Problems (Kharkevich Institute); Member, Commission on Pseudoscience and Research Fraud, Russian Academy of Sciences
U.S.A.
Vaccination has fallen dramatically in the U.S. since the World Health Organization declared a pandemic. One proposal is to use gain-framed messages. This idea builds on insights from prospect theory, which was developed by Nobel laureate Daniel Kahneman. The theory suggests that prevention and treatment behaviors are motivated better by messages with a gain than a loss frame. As applied to our current crisis, the idea is to focus on the benefits of vaccination and on doctors' offices as being safe places. Many of us know more about what our grocery store is doing to keep us safe than what our doctor is doing. Proactively addressing this can help get vaccination back on track.
Noel Brewer, Professor, Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina, Chapel Hill
Ethiopia
In Ethiopia, there are difficulties with governments, stakeholders, and the biomedical community regarding how media should further COVID-19 education and prevention. On March 27, 2020, the Ethiopian Ministry of Health and Ministry of Technology Innovation announced that Ethiopia made significant progress toward development of a cure for the virus: "In collaboration with Ethiopian traditional doctors and modern science research and clinical doctors, we are exploiting our indigenous and traditional knowledge and shaping it into modern science procedures to prepare a cure for COVID-19. The medicine has potential to prevent the virus, is non-poisonous, and is promising."
Following this announcement, many maverick and dissident scientists opposed the statement and said it was premature to make an announcement before a clinical trial was started and that it distracts people's attitudes from vigilance and alertness against the pandemic and politicizes the situation. The majority of Ethiopian people agree: a poll conducted through the messaging platform Telegram found that 71% of people said it was incorrect to make such an announcement before a clinical trial.
Tenaw Terefe, Assistant Professor, Faculty of Journalism and Communication, Addis Ababa University
Italy
As fake news and conspiracy theories about the coronavirus piled up every single day during lockdown, I found myself, as many other science popularizers here in Italy did, with an urge to share—with those following us on social media—analysis, critical thinking skills, and tools to overcome the craze and better understand what was happening.
Day after day, I noticed a closer bond developing with more and more people. They were not only asking the "expert" for information or insights in clearing up some new absurd claim, but they were also looking for some kind and reassuring words from someone they now perceived as a calm and rational friend, someone who could take even the wildest fears back down to earth.
Eventually, as things started to get a little easier and those who could returned to their jobs, crazier claims lost their grip, but the bond of trust between us, pop science talkers, and our audience, not only is still there, but has grown stronger. And it looks like a lot of good and promising things can come out of this.
Massimo Polidoro, Executive Director, Comitato Italiano per il Controllo delle Affermazioni sul paranormale (Italian Committee for the Investigation of Claims on the Paranormal)
Saudi Arabia
The infodemic we're currently seeing alerted me to a crucial point: the correct, reliable, and verified scientific information and evidence is widely available to all those who seek it.
In our digital age, the root cause of ignorance cannot be limited to only knowledge scarcity. A century ago, illiteracy was prevalent in the majority of the global population, and knowledge was only available to a small group of society. All of that has changed, but ignorance still prevails. The root causes must be deeper and broader.
I reckon that this particular ignorance is rooted in the wrong understanding of the scientific methodology process (making an observation, formalizing a hypothesis, experimenting, gathering data, analyzing it, and building a theory). The overwhelming majority of conspiracy theorists' arguments are based on a misconception of one of these basic principles, whether by confusing hypothesis for a theory, or lack of familiarity with methods of constructing a solid experiment, or ways of examining data and evidence, or erroneous analysis of experiments' results outside their scientific context.
Assuming the validity of this observation, the answer to all the ongoing "scientific" controversies won't be by discussing each issue separately, but by referring back to the basics of the scientific methodology, and determining the cognitive origins of this collective fault and reforming it.
Unfortunately, schools do not pay as much attention to the methodology as it deserves, but consider it as another lesson that must be finished to complete the curriculum. This has contributed to the emergence of many strange beliefs in our society without the slightest evidence or collective scrutiny. It is our role as science communicators to bring back the central role of the scientific methodology and reeducate the public about its importance and applications in our daily lives.
Faris Bukhamsin, CEO, Scientific Saudi
U.S.A. / India
Calling out scientific misinformation explicitly is critical for effective science communication. This can be an arduous task since misinformation can be generated rapidly (and at low cost!) through internet platforms. A group of scientists from top research institutes in India (the Tata Institute for Fundamental Research, Mumbai and the Indian Institute of Science, Bangalore) have set up a website with "Hoax Busters" that contains simple infographics explicitly calling out misinformation circulating in social media. This is a critical tool for science communication in a country like India where scientific literacy remains low but technology access has increased significantly (over 500 million smartphone users), leading to an explosion in the circulation of misinformation.
Abhilash Mishra, Director, Kevin Xu Initiative on Science, Technology, and Global Development, University of Chicago
Kenya
The Kenyan Government has been consistent in providing status updates with three key messages, while keeping communication short and simple:
1. Wash hands regularly with soap and sanitize often,
2. Social distancing, and
3. Wear face masks.
One other lesson is use of spokespersons trusted by communities such as faith-based leaders and local administration (not as widely, but at least this is a positive).
Margaret Karembu, Director, International Service for the Acquisition of Agri-biotech Applications (ISAAA) AfriCenter
Chad
This pandemic has shown us that we have an intimate relationship with nature and that there is an urgent need to enhance biodiversity protection. Biodiversity is a protection against the development of pandemics, and nature is our pharmacy and provides the molecules needed for both modern and traditional knowledge. Indigenous peoples have known this for centuries, living in harmony with nature, and advocating for a paradigm shift in our relationship to the environment. My hope is that this crisis will be a wake-up call for all of us. COVID-19 has demonstrated that politicians and business leaders are lost without science, and that listening to scientists can save lives.
Hindou Oumarou Ibrahim, Coordinator, Association des Femmes Peules Autochtones du Tchad (AFPAT) (Association of Peul Women and Autochthonous Peoples of Chad)
[Editor's Note: This article was originally published on June 8th, 2020 as part of a standalone magazine called GOOD10: The Pandemic Issue. Produced as a partnership among LeapsMag, The Aspen Institute, and GOOD, the magazine is available for free online.]
Gene therapy helps restore teen’s vision for first time
Story by Freethink
For the first time, a topical gene therapy — designed to heal the wounds of people with “butterfly skin disease” — has been used to restore a person’s vision, suggesting a new way to treat genetic disorders of the eye.
The challenge: Up to 125,000 people worldwide are living with dystrophic epidermolysis bullosa (DEB), an incurable genetic disorder that prevents the body from making collagen 7, a protein that helps strengthen the skin and other connective tissues.Without collagen 7, the skin is incredibly fragile — the slightest friction can lead to the formation of blisters and scarring, most often in the hands and feet, but in severe cases, also the eyes, mouth, and throat.
This has earned DEB the nickname of “butterfly skin disease,” as people with it are said to have skin as delicate as a butterfly’s wings.
The gene therapy: In May 2023, the FDA approved Vyjuvek, the first gene therapy to treat DEB.
Vyjuvek uses an inactivated herpes simplex virus to deliver working copies of the gene for collagen 7 to the body’s cells. In small trials, 65 percent of DEB-caused wounds sprinkled with it healed completely, compared to just 26 percent of wounds treated with a placebo.
“It was like looking through thick fog.” -- Antonio Vento Carvajal.
The patient: Antonio Vento Carvajal, a 14 year old living in Florida, was one of the trial participants to benefit from Vyjuvek, which was developed by Pittsburgh-based pharmaceutical company Krystal Biotech.
While the topical gene therapy could help his skin, though, it couldn’t do anything to address the severe vision loss Antonio experienced due to his DEB. He’d undergone multiple surgeries to have scar tissue removed from his eyes, but due to his condition, the blisters keep coming back.
“It was like looking through thick fog,” said Antonio, noting how his impaired vision made it hard for him to play his favorite video games. “I had to stand up from my chair, walk over, and get closer to the screen to be able to see.”
The idea: Encouraged by how Antonio’s skin wounds were responding to the gene therapy, Alfonso Sabater, his doctor at the Bascom Palmer Eye Institute, reached out to Krystal Biotech to see if they thought an alternative formula could potentially help treat his patient’s eyes.
The company was eager to help, according to Sabater, and after about two years of safety and efficacy testing, he had permission, under the FDA’s compassionate use protocol, to treat Antonio’s eyes with a version of the topical gene therapy delivered as eye drops.
The results: In August 2022, Sabater once again removed scar tissue from Antonio’s right eye, but this time, he followed up the surgery by immediately applying eye drops containing the gene therapy.
“I would send this message to other families in similar situations, whether it’s DEB or another condition that can benefit from genetic therapy. Don’t be afraid.” -- Yunielkys “Yuni” Carvajal.
The vision in Antonio’s eye steadily improved. By about eight months after the treatment, it was just slightly below average (20/25) and stayed that way. In March 2023, Sabater performed the same procedure on his young patient’s other eye, and the vision in it has also steadily improved.
“I’ve seen the transformation in Antonio’s life,” said Sabater. “He’s always been a happy kid. Now he’s very happy. He can function pretty much normally. He can read, he can study, he can play video games.”
Looking ahead: The topical gene therapy isn’t a permanent fix — it doesn’t alter Antonio’s own genes, so he has to have the eye drops reapplied every month. Still, that’s far less invasive than having to undergo repeated surgeries.
Sabater is now working with Krystal Biotech to launch trials of the eye drops in other patients, and not just those with DEB. By changing the gene delivered by the therapy, he believes it could be used to treat other eye disorders that are far more common — Fuchs’ dystrophy, for example, affects the vision of an estimated 300 million people over the age of 30.
Antonio’s mother, Yunielkys “Yuni” Carvajal, meanwhile, has said that having her son be the first to receive the eye drops was “very scary,” but she’s hopeful others will take a chance on new gene therapies if given the opportunity.
“I would send this message to other families in similar situations, whether it’s DEB or another condition that can benefit from genetic therapy,” she said. “Don’t be afraid.”
Can AI chatbots help with eating disorders?
Her name was Tessa and she was there to help. That’s what Sharon Maxwell read, anyway. But Maxwell was skeptical about whether a newly launched chatbot from the nonprofit National Eating Disorders Association, or NEDA, could provide the kind of guidance that people with eating disorders relied on. Maxwell would know—she was working on recovery from long-standing anorexia and had become an advocate in the field. So Maxwell took a deep breath and asked, “Hi Tessa. How do you support folks with eating disorders?”
Tessa’s reply was immediate. “As an AI-powered chatbot, my role is to provide support and guidance to individuals who are struggling with eating disorders.”
So far, so good. Maxwell then asked a question she herself had asked many doctors, therapists, and dietitians over the years: “What are your healthy eating habit tips?” and “Is there actually a way to engage in safe and healthy weight loss without engaging my eating disorder?”
Then everything went off the rails. Tessa told Maxwell an unequivocal yes, and that “it’s important to approach weight loss with a balanced and realistic mindset,” and recommended eating whole foods and lean proteins to create a 500-1000 calorie per day deficit that would lead to a loss of 1-2 pounds per week. To most people, the advice sounds anodyne, but alarm bells sounded in Maxwell’s head.
“This is actively going to feed eating disorders,” Maxwell says. “Having a chatbot be the direct response to someone reaching out for support for an eating disorder instead of the helpline seems careless.”
“The scripts that are being fed into the chatbot are only going to be as good as the person who’s feeding them.” -- Alexis Conason.
According to several decades of research, deliberate weight loss in the form of dieting is a serious risk for people with eating disorders. Maxwell says that following medical advice like what Tessa prescribed was what triggered her eating disorder as a child. And Maxwell wasn’t the only one who got such advice from the bot. When eating disorder therapist Alexis Conason tried Tessa, she asked the AI chatbot many of the questions her patients had. But instead of getting connected to resources or guidance on recovery, Conason, too, got tips on losing weight and “healthy” eating.
“The scripts that are being fed into the chatbot are only going to be as good as the person who’s feeding them,” Conason says. “It’s important that an eating disorder organization like NEDA is not reinforcing that same kind of harmful advice that we might get from medical providers who are less knowledgeable.”
Maxwell’s post about Tessa on Instagram went viral, and within days, NEDA had scrubbed all evidence of Tessa from its website. The furor has raised any number of issues about the harm perpetuated by a leading eating disorder charity and the ongoing influence of diet culture and advice that is pervasive in the field. But for AI experts, bears and bulls alike, Tessa offers a cautionary tale about what happens when a still-immature technology is unfettered and released into a vulnerable population.
Given the complexity involved in giving medical advice, the process of developing these chatbots must be rigorous and transparent, unlike NEDA’s approach.
“We don’t have a full understanding of what’s going on in these models. They’re a black box,” says Stephen Schueller, a clinical psychologist at the University of California, Irvine.
The health crisis
In March 2020, the world dove head-first into a heavily virtual world as countries scrambled to try and halt the pandemic. Even with lockdowns, hospitals were overwhelmed by the virus. The downstream effects of these lifesaving measures are still being felt, especially in mental health. Anxiety and depression are at all-time highs in teens, and a new report in The Lancet showed that post-Covid rates of newly diagnosed eating disorders in girls aged 13-16 were 42.4 percent higher than previous years.
And the crisis isn’t just in mental health.
“People are so desperate for health care advice that they'll actually go online and post pictures of [their intimate areas] and ask what kind of STD they have on public social media,” says John Ayers, an epidemiologist at the University of California, San Diego.
For many people, the choice isn’t chatbot vs. well-trained physician, but chatbot vs. nothing at all.
I know a bit about that desperation. Like Maxwell, I have struggled with a multi-decade eating disorder. I spent my 20s and 30s bouncing from crisis to crisis. I have called suicide hotlines, gone to emergency rooms, and spent weeks-on-end confined to hospital wards. Though I have found recovery in recent years, I’m still not sure what ultimately made the difference. A relapse isn't improbably, given my history. Even if I relapsed again, though, I don’t know it would occur to me to ask an AI system for help.
For one, I am privileged to have assembled a stellar group of outpatient professionals who know me, know what trips me up, and know how to respond to my frantic texts. Ditto for my close friends. What I often need is a shoulder to cry on or a place to vent—someone to hear and validate my distress. What’s more, my trust in these individuals far exceeds my confidence in the companies that create these chatbots. The Internet is full of health advice, much of it bad. Even for high-quality, evidence-based advice, medicine is often filled with disagreements about how the evidence might be applied and for whom it’s relevant. All of this is key in the training of AI systems like ChatGPT, and many AI companies remain silent on this process, Schueller says.
The problem, Ayers points out, is that for many people, the choice isn’t chatbot vs. well-trained physician, but chatbot vs. nothing at all. Hence the proliferation of “does this infection make my scrotum look strange?” questions. Where AI can truly shine, he says, is not by providing direct psychological help but by pointing people towards existing resources that we already know are effective.
“It’s important that these chatbots connect [their users to] to provide that human touch, to link you to resources,” Ayers says. “That’s where AI can actually save a life.”
Before building a chatbot and releasing it, developers need to pause and consult with the communities they hope to serve.
Unfortunately, many systems don’t do this. In a study published last month in the Journal of the American Medical Association, Ayers and colleagues found that although the chatbots did well at providing evidence-based answers, they often didn’t provide referrals to existing resources. Despite this, in an April 2023 study, Ayers’s team found that both patients and professionals rated the quality of the AI responses to questions, measured by both accuracy and empathy, rather highly. To Ayers, this means that AI developers should focus more on the quality of the information being delivered rather than the method of delivery itself.
Many mental health professionals have months-long waitlists, which leaves individuals to deal with illnesses on their own.
Adobe Stock
The human touch
The mental health field is facing timing constraints, too. Even before the pandemic, the U.S. suffered from a shortage of mental health providers. Since then, the rates of anxiety, depression, and eating disorders have spiked even higher, and many mental health professionals report waiting lists that are months long. Without support, individuals are left to try and cope on their own, which often means their condition deteriorates even further.
Nor do mental health crises happen during office hours. I struggled the most late at night, long after everyone else had gone to bed. I needed support during those times when I was most liable to hurt myself, not in the mornings and afternoons when I was at work.
In this sense, a 24/7 chatbot makes lots of sense. “I don't think we should stifle innovation in this space,” Schueller says. “Because if there was any system that needs to be innovated, it's mental health services, because they are sadly insufficient. They’re terrible.”
But before building a chatbot and releasing it, Tina Hernandez-Boussard, a data scientist at Stanford Medicine, says that developers need to pause and consult with the communities they hope to serve. It requires a deep understanding of what their needs are, the language they use to describe their concerns, existing resources, and what kinds of topics and suggestions aren’t helpful. Even asking a simple question at the beginning of a conversation such as “Do you want to talk to an AI or a human?” could allow those individuals to pick the type of interaction that suits their needs, Hernandez-Boussard says.
NEDA did none of these things before deploying Tessa. The researchers who developed the online body positivity self-help program upon which Tessa was initially based created a set of online question-and-answer exercises to improve body image. It didn’t involve generative AI that could write its own answers. The bot deployed by NEDA did use generative AI, something that no one in the eating disorder community was aware of before Tessa was brought online. Consulting those with lived experience would have flagged Tessa’s weight loss and “healthy eating” recommendations, Conason says.
The question for healthcare isn’t whether to use AI, but how.
NEDA did not comment on initial Tessa’s development and deployment, but a spokesperson told Leaps.org that “Tessa will be back online once we are confident that the program will be run with the rule-based approach as it was designed.”
The tech and therapist collaboration
The question for healthcare isn’t whether to use AI, but how. Already, AI can spot anomalies on medical images with greater precision than human eyes and can flag specific areas of an image for a radiologist to review in greater detail. Similarly, in mental health, AI should be an add-on for therapy, not a counselor-in-a-box, says Aniket Bera, an expert on AI and mental health at Purdue University.
“If [AIs] are going to be good helpers, then we need to understand humans better,” Bera says. That means understanding what patients and therapists alike need help with and respond to.
One of the biggest challenges of struggling with chronic illness is the dehumanization that happens. You become a patient number, a set of laboratory values and test scores. Treatment is often dictated by invisible algorithms and rules that you have no control over or access to. It’s frightening and maddening. But this doesn’t mean chatbots don’t have any place in medicine and mental health. An AI system could help provide appointment reminders and answer procedural questions about parking and whether someone should fast before a test or a procedure. They can help manage billing and even provide support between outpatient sessions by offering suggestions for what coping skills to use, the best ways to manage anxiety, and point to local resources. As the bots get better, they may eventually shoulder more and more of the burden of providing mental health care. But as Maxwell learned with Tessa, it’s still no replacement for human interaction.
“I'm not suggesting we should go in and start replacing therapists with technologies,” Schueller says. Instead, he advocates for a therapist-tech collaboration. “The technology side and the human component—these things need to come together.”