The Misinformation Ecosystem Surrounding PCOS, Bridging Gaps to Counter Digital Myths
In 2023, PIB reported that up to 22% of young women in India are affected by Polycystic Ovarian Syndrome (PCOS). However, access to reliable information regarding the condition and its treatment remains a challenge. A study by the PGIMER Chandigarh conducted in 2021 revealed that approximately 37% of affected women rely on the internet as their primary source of information for PCOS. However, it can be difficult to distinguish credible medical advice from misleading or inaccurate information online since the internet and social media are rife with misinformation. The uptake of misinformation can significantly delay the diagnosis and treatment of medical conditions, jeopardizing health outcomes for all.
The PCOS Misinformation Ecosystem Online
PCOS is one of the most common disorders diagnosed in the female endocrine system, characterized by the swelling of ovaries and the formation of small cysts on their outer edges. This may lead to irregular menstruation, weight gain, hirsutism, possible infertility, poor mental health, and other symptoms. However, there is limited research on its causes, leaving most medical practitioners in India ill-equipped to manage the issue effectively and pushing women to seek alternate remedies from various sources.
This creates space for the proliferation of rumours, unverified cures and superstitions, on social media, For example, content on YouTube, Facebook, and Instagram may promote “miracle cures” like detox teas or restrictive diets, or viral myths claiming PCOS can be “cured” through extreme weight loss or herbal remedies. Such misinformation not only creates false hope for women but also delays treatment, or may worsen symptoms.
How Tech Platforms Amplify Misinformation
- Engagement vs. Accuracy: Social media algorithms are designed to reward viral content, even if it’s misleading or incendiary since it generates advertisement revenue. Further, non-medical health influencers often dominate health conversations online and offer advice with promises of curing the condition.
- Lack of Verification: Although platforms like YouTube try to provide verified health-related videos through content shelves, and label unverified content, the sheer volume of content online means that a significant chunk of content escapes the net of content moderation.
- Cultural Context: In India, discussions around women’s health, especially reproductive health, are stigmatized, making social media the go-to source for private, albeit unreliable, information.
Way Forward
a. Regulating Health Content on Tech Platforms: Social media is a significant source of health information to millions who may otherwise lack access to affordable healthcare. Rather than rolling back content moderation practices as seen recently, platforms must dedicate more resources to identify and debunk misinformation, particularly health misinformation.
b. Public Awareness Campaigns: Governments and NGOs should run nationwide campaigns in digital literacy to educate on women’s health issues in vernacular languages and utilize online platforms for culturally sensitive messaging to reach rural and semi-urban populations. This is vital for countering the stigma and lack of awareness which enables misinformation to proliferate.
c. Empowering Healthcare Communication: Several studies suggest a widespread dissatisfaction among women in many parts of the world regarding the information and care they receive for PCOS. This is what drives them to social media for answers. Training PCOS specialists and healthcare workers to provide accurate details and counter misinformation during patient consultations can improve the communication gaps between healthcare professionals and patients.
d. Strengthening the Research for PCOS: The allocation of funding for research in PCOS is vital, especially in the face of its growing prevalence amongst Indian women. Academic and healthcare institutions must collaborate to produce culturally relevant, evidence-based interventions for PCOS. Information regarding this must be made available online since the internet is most often a primary source of information. An improvement in the research will inform improved communication, which will help reduce the trust deficit between women and healthcare professionals when it comes to women’s health concerns.
Conclusion
In India, the PCOS misinformation ecosystem is shaped by a mix of local and global factors such as health communication failures, cultural stigma, and tech platform design prioritizing engagement over accuracy. With millions of women turning to the internet for guidance regarding their conditions, they are increasingly vulnerable to unverified claims and pseudoscientific remedies which can lead to delayed diagnoses, ineffective treatments, and worsened health outcomes. The rising number of PCOS cases in the country warrants the bridging of health research and communications gaps so that women can be empowered with accurate, actionable information to make the best decisions regarding their health and well-being.
Sources
- https://pib.gov.in/PressReleasePage.aspx?PRID=1893279#:~:text=It%20is%20the%20most%20prevailing%20female%20endocrine,neuroendocrine%20system%2C%20sedentary%20lifestyle%2C%20diet%2C%20and%20obesity.
- https://www.thinkglobalhealth.org/article/india-unprepared-pcos-crisis?utm_source=chatgpt.com
- https://www.bbc.com/news/articles/ckgz2p0999yo
- https://pmc.ncbi.nlm.nih.gov/articles/PMC9092874/