Online COVID-19 repositories of cures in Poland: digital distrust, misinformation, collaboration
Author: Magdalena H. Góralska, a digital anthropologist from Poland, a researcher at the Kozminski University, and a student at the University of Warsaw. She studies health communication across digital platforms since 2016 using ethnographic research methods. You can contact Magdalena at email@example.com.
Fieldsite: Health advice groups on Polish-speaking, but globally stretched Facebook, with numerous members, but high levels of daily activity, either focused on alternative ways of healthcare or the ‘evidence-based’ medicine.
Insights shared here are a part of a long-term study that dates back to late 2016, when I received pre-doctoral funding to study networked knowledge production on the Internet, with a focus on health across the Polish-speaking Web. To approach ‘information networks’ ethnographically and be able to navigate the complexity of the Web, yet still reflect the numerous individual and collective agencies that are involved in making that information circulate online, I have chosen to focus on four types of prod-users in two categories. The four types are: experts, journalist/media, advocates/activists, the public/audiences, and the two categories are: evidence-based medicine and very broadly defined TACM – traditional, alternative, complementary medicine. The study has a networked fieldwork, that is common among digital ethnographies. This description is extremely brief and cuts short any subtleties of my fieldwork, which are yet to be described in upcoming journal articles.
Corona fieldwork overview
In February 2020 I have come to realise I need to include coronavirus into my research scope, but it was only two weeks into March that my ethnographic subfield set in. I decided to start with the public/audiences part of my overly complex fieldsite, and focus on health advice groups on Polish-speaking Facebook. When it comes to TACM-oriented groups I am an ethnographic member of four of them, all interconnected by social networks. When it comes to the ‘evidence-based’ medicine, the groups are both new and old – the new ones are strictly corona-oriented, while the old ones are more general topic-wise. All groups except one are private, and the number of members in each group ranges from a few thousand to several tens of thousands. The older groups are the more active ones, with dozens of posts per day and numerous comments, while the newer groups are less active – several posts a day, or every other day, with some commentary. The insights I am sharing in this contribution are informed both by my recent findings, but are also rely heavily on the understanding I gained before the pandemic, and have withstood the test of coronavirus times.
Methodology: interviews with group members, participant observation, including following links that take me out of the social media platform to an outside source, which I am also approaching for an interview.
Seeking COVID-19 cures
One doesn’t necessarily go to social media to look for health information, especially when it comes to the coronavirus pandemic. Such information finds you itself, when you scroll the newsfeed on Facebook, Instagram, or Twitter checking out what others have been up to, what people are talking about, and so on. It might be that you stumble upon a post from a friend who shares a link found in one of the health advice groups of Facebook. This is how you learn that such a group exists, and become a member. But there are also other ways. If a group is public, you may see your friend posting in such groups. Or, type a term into the Facebook search engine, and you can find thematic groups and pages of various levels of popularity.
Facebook health advice groups I have been studying as a part of my project, and the new groups on coronavirus that I have included into my fieldwork more recently, serve as a forum to either ask questions or share information that might interest others. The health advice groups, either interested in alternative healthcare or mainstream medicine, are question-centered: a person has a health issue, or someone they know has one, or otherwise is looking for answers, so posts a question (sometimes illustrated with pictures of the disease), and gets comments. They can vary in number and specificity – some remarks are more general, or contain wishes of good health, some are long paragraphs of elaborate advice based on one’s personal experience or knowledge otherwise gained, with reference to sources. Some groups in the Facebook’s “grouposphere” are run by activists or advocates for certain healthcare methods, some were set up by ‘lay public’. Either way, the majority of such groups is private and most are moderated by an admin. The moderation agenda varies, of course, but the majority of groups allows for some content that isn’t strictly health-related advice, but also commentary of a political nature.
In February and March, in the TACM and mainstream medicine groups, the number of questions about immune system boosters and virus prevention went up, and these got more specific the closer the pandemic got to Poland, or the countries members of Polish diaspora live in. The questions would often be general ones such as “What can we do against the coronavirus?” (pl. “co na koronowirusa?”), or verifying the efficacy of certain treatments, such as “Does colloidal silver really work against viruses?” (pl. “czy srebro koloidalne naprawdę działa na wirusy”?).
The novel coronavirus-oriented groups were created either by Polish media outlets as a part of an information campaign, or by private Facebook users. The moderation agenda of groups run by the media on Facebook is to filter out any fear-mongering content, and make sure users are well-informed, with up-to-date data. The groups that are run by “mere mortals”, not journalists, are more open, and often do approve posts that question official COVID-19 statistics, or wander in the direction of conspiracy theories.
Answering Question Number One
The original question topic one aimed to cover was as follows:
Can you please find out how precisely people are gaining online information about the virus and how they are using online platforms to share this information with others? What strategies do they use to establish trust in this information?
This is a question I have been asking myself for the entire duration of my research project. The answer I can give right now, based on my previous findings, and on recently gathered empirical data on the COVID-19 pandemic, is as follows:
- Whether they are sceptical or trusting towards government sources, group members I have spoken to still check these.
- The community knowledge factor and personal experience factor are what makes knowledge coming from health advice groups reliable – I call it the ‘digital distance paradox’. Even though someone is a stranger who lives far away, the fact that they are both members of the same group, and are both aiming to take care of their health makes them trust one another more. This is especially true when one gets multiple and varied answers to their questions – answers they can choose from. This is also true when solutions and methods are described in more detail, and come up again and again.
- Being a member of such a group often means that one is more interested in health issues – more critical. Some accuse followers of TACM or being naïve believers in pseudoscience. My research shows that this is seldom the case – to be interested in TACM means one has put in a special effort to find it and learn about it, although this does not apply to grandma’s style homemade remedies, which belong to the common knowledge category, and are not that difficult to find. The problem the believers in so-called pseudoscience and pseudomedicine have isn’t related to critical thinking, it is rather about being disappointed in the dominant healthcare system, and a need for wholesome, personal approach.
- ‘Doing my own research’ is the most common answer when asked to a group health advice member. The Internet allows to access a seemingly infinite repository of knowledge, and while it can seem overwhelming at first, one’s habitus and cultural and social capital set boundaries that mark ‘it’s enough’ feeling that puts stop to the search, or, alternatively – one can get fed up with various sources available online. What source should one choose? “I read it – if it makes sense to me I test it, and then we will see what’s next.” (Teresa, 53).
- Digital distrust – the Internet often creates a habit of checking what others are saying, instead of trusting them right away, even if they have some sort of conventional authority, either as a medical doctor, or a nurse, pharmacist, an academic, or a priest. “I can always google it” is the agency the Internet gives its users, allowing them to check on whatever they learn about. As a result, they either verify or confirm the information or reject it, based on their personal judgement.
- The ‘infodemic’ – for my interviewees, this simply meant there was an overabundance of information, meaning one is always confused about what the latest update is.
Studies and findings from the life sciences which have not yet been peer-reviewed but are relevant to coronavirus are being made openly accessible with every passing day – these papers often find their way into my research participants’ reasons and arguments for making a specific decision in relation to treatment. Examples are papers that suggest that Vitamin C or Chlorhexicine work against COVID-19.
The popularity of health advice groups, whether TACM or mainstream medicine-oriented, or somewhere in-between, raises questions about the state of the dominant healthcare system in Poland, and across the world, where voices critical towards ‘evidence-based medicine’ can be found all over the web. The Internet gave its users the power to google – this power cannot be taken away, but how can the doubt towards conventional medical authorities be addressed?
Misinformation about COVID-19 has been a target for tech companies for over a month now, with content moderation rules becoming stricter with every passing week. While disinformation such as scapegoating migrants for ‘bringing in’ the virus is easier to define and target, misinformation regarding cures and preventive measures is a grey zone. When politicians in various European countries are discussing whether or not using masks should be obligatory (some doctors say these don’t much, and work more as a reminder, satisfying a psychological need to “do something”), how can a technology company better decide what information should be banned? Is it the case that information on garlic cures can stay, and so can articles related to intake of high doses of Vitamin C, but Ayurvedic mixtures can’t? My interviewees are confused when it comes to Facebook policies, seeing the platform flag their post when they share herbal remedies as coronavirus preventive measures, which “independent reviewers” have classified as bogus.
Disclaimer: this is a research note that is by no means conclusive and serves as a fresh-out-of-the-press insight. If you would like to more know about my fieldwork and findings, please, contact me or follow me via social media. You can access my website here.
Funding acknowledgement: my work is funded by the Ministry of Science and Higher Education in Poland, via a pre-doctoral funding scheme ‘Diamond Grant’, ed. 2016 (grant MNiSW nr 0252/DIA/2016/45, nr OK – 697).