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How feminist social media research can benefit public health

September 9, 2021
By Fanny Gravel-Patry

Hand holding a cell phone

In March 2020, the Government of Québec made a plea to social media influencers asking them to use their platforms to encourage youth to stay at home and respect public health measures. More recently, the government took to apps like TikTok to raise awareness around the importance of vaccination to end the pandemic.

Social media are changing how public health messages are disseminated, as well as transforming public health research. In this article, I address some of its limits and how using a feminist social media research framework can benefit public health in doing research that is more focused on people and their needs.

The Health Costs of Data Surveillance

Social media are reshaping how public health messages are broadcasted, while providing new tools for public health agencies to learn about health concerns and topics that are not usually considered in traditional public health data. This is possible because social media platforms like Twitter, Facebook, and Instagram provide a space for people to have health related conversations.

In my research, I study how women with mental illness turn to social networks to find support. This is also the case for many communities such as people with endometriosis, and, more recently, Covid “long haulers.” Social media platforms monitor and track these conversations through hashtags and other algorithmic functions. For public health organizations, this means an endless pool of data from which to extract material.

But  what is the cost of mining data in this way?

When it comes to the impact on people’s health, serious ethical questions need to be asked about the way public health research is being conducted on social media. Feminist social media scholars have demonstrated how dangerous data mining and surveillance can be for marginalized groups especially when it is done without their consent. It can easily lead to generalizations regarding people’s health thus hurting already at-risk populations. For example, it can result in over-policing of already stigmatized populations.

People Before the Data

Public health could benefit from feminist social media research because it prioritizes the voices and wellbeing of the studied population rather than the size of the data set. This means that the priority is to make sure that the people whose social media posts and practices we are studying are being respected. This is done by asking for their consent, respecting anonymity, or simply foregrounding their experience. Data is then collected through in-depth interviews, media walk-throughs -- a method wherein the participant takes you along their media routine -- and focus groups. This approach allows to the research to focus on details that might otherwise get lost in larger scale data.

This is particularly important at a moment when people are increasingly turning to social media to share their health concerns. Vulnerable populations such as cancer patients, the immunocompromised, and people experiencing long Covid, have massively turned to social media communities to express feeling left-out of public health initiatives during the pandemic.

Gathering large-scale data sets regarding social media practices can help paint a big picture -- like getting a sense of how many people have experienced long-Covid, something we may not have known otherwise. Such data does not - however - consider the details of what these people have to say and how their experience of long-Covid can inform public health decisions.

Reducing Stigma

Instead of letting only the data speak for itself, feminist social media research is driven by a need to include people’s voices and minimize the stigma that surrounds certain illnesses and disabilities. This is possible through collaboration and knowledge-sharing. People with disabilities and illnesses, especially women and people of colour, are often disregarded by medical institutions when it comes to their understanding of their bodies.

Focusing on people as knowledge producers, and not just data sets to whom “illnesses” happen, helps reduce the stigma surrounding illness and disability – an element that should be of top concern for public health.

About the author

Photo of Fanny Gravel-Patry

Fanny Gravel-Patry (she/her) is a PhD candidate and lecturer in the communication studies department at Concordia University. She holds a BA (2012) and MA (2015) in Art History from Université de Montréal. She studies mental illness, media practices of care, and digital visual culture.

Her dissertation looks at the Instagram practices of women living with mental illness and their use of the app as a tool for care. Her work was recently published by Les Presses de l’Université de Montréal in a special issue on digital images. In addition to her research, Fanny has been the communications officer of the Communication Doctoral Student Association since 2019 and she is an active member of the Feminist Media Studio. Her doctoral research is supported by Fonds de Recherche du Québec - Société et Culture (FRQSC) and Concordia University.

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