Applying infodemic management models to misinformation on sexual and reproductive health and rights

I was invited today to join in a discussion of addressing health misinformation in the wide-reaching area of work on sexual and reproductive health and rights. As I was preparing the talk, I discussed with Elisabeth Wilhelm , just to get things started. This is a topic on which nurses and community organizers, among others, could have lots of stories on.

For health emergencies, we develop tools and approaches that help us address the infodemic during crises - when an infodemic, an overabundance of information, including mis- and disinformation surges during an acute health event. But slower-moving infodemics, like AMR, sexual and reproductive health, cancer, tobacco use and nutrition all have similar characteristics. So frameworks and tools we've developed, grounded in public health approaches, can be applied to other health topics and contexts as well

Ultimately, it comes down to one truth:

People search for and use health information when they need it, not when we are ready to give it to them.

I normally look at recent headlines in relation to the infodemic and misinformation that get at some of the challenges that the information environment poses to cut through the noise and improve access to quality health information on a topic of choice. Look at the headlines in the header image (and linked below):

• The internet is a bit of a Wild West of sexual and reproductive health and rights-related information, where individuals can author, remix and reuse content willy-nilly.
• Digital technologies collect a lot of data on our digital footprints, which can have huge privacy, ethics and human rights implications.
• But it’s not just misinformation—see the woman who is a professional fact-checker who was overwhelmed with pregnancy-related information when she was pregnant.
• Algorithms also affect what content is being served and to whom—like on Tiktok—and often health authorities are far too slow to catch up or have a presence on platforms where young people gather.

As I was researching, found out that the female sexual and reproductive wellness industry is flourishing, valued at around US$4.5trn USD globally. I've talked elsewhere about the issues of the health and wellness influencers and how an influencer acts to promote own brand which is values-based based, not fact-based. This often makes influencers over time an unreliable longer-term partner in campaigns on health topics.

I also came across this paper which determined that 76% of patients found misinformation about endometriosis online, and patients with higher anxiety were associated with a higher risk of finding misinformation about endometriosis. This is a telling example of health information inequalities. Misinformation affects different populations differently, and to have any real impact in the mitigation of misinformation harm we need to do a lot better applying equity and rights approaches to our actions.

SDG target 3.7 makes explicit reference to ensuring universal access to accurate information and education as a key determinant of SRH. Sexual and reproductive health is the only health topic where health information equity was explicitly mentioned in the SGD targets. Since SDG indicators were being negotiated, the information environment has changed several times over, and the challenges of health misinformation have become worse. We've highlighted the need for health information equity as part of any infodemic management strategy.

Then in 2021, UNDP published a discussion paper on the ethical and human rights risks relating to power imbalances and information asymmetries in the use of digital technologies to deliver SRH services. And things have only gotten worse since. Many health authorities are simply not equipped with skills and policies to address such a complex phenomenon, For example, the current big challenge that is capturing the media cycle about AI and the hype surrounding it is missing the point that our relationship with health information and evidence has been slowly changing for the past 20 years. Patterns of human development, digitalization, and socioeconomic and commercial changes in relation to information have all changed how we seek, feel about and use information. We cannot keep solely focusing on digital technologies when leaps have been made in thinking about risk-based AI governance in health, and #responsibleAI and #ethicalAI frameworks that are driven by communities most affected by biased tools and systems.

Equity and rights-based principles are at the core of public health. When we think about the information environment, they need to be at the center of health information action as well. if not, it will be like we're focusing on piping and ductwork versus the overall design that is affecting how health programs can serve their communities of focus.?

What challenges specific to SRH topics do we face in the information environment?

I broke down the five elements of a health information environment in context of sexual and reproductive health and rights. You’ll notice that it doesn’t talk about chasing pieces of misinformation like a butterfly hunter or debunking. We need to employ different strategies that help health programs and health partners interact with the information environment and how it is designed. Thinking along these five domains, also helps us adapt because especially digital spaces keep advancing as business models and technology advance.

So what should we be thinking about, to future-proof our approaches?

• Ethics of social listening and interventions targeting health information-seeking behaviors are critical to developing policies for, especially for stigmatizing topics like SRHR --> apply ethics frameworks to your work.
• There are organized anti-SRHR groups (like in the vaccine space) that propagate mis- and disinformation --> develop strategies on how to address common harmful narratives. An example of how to address science denialism or groups organized against a particular health topic comes from vaccine acceptance space, WHO Europe has developed tools for example on how to address vocal vaccine deniers. Similar tactics can be used for SRHR and applied in digital spaces if needed.
• There’s profit to be made on SRHR topics, especially in online spaces. Profit motives impact the quality and accuracy of health information that people receive on their devices --> educate program staff and policymakers on how commercial interests (like the wellness industry) interact in this space and shape the online information environment
• The availability of credible, accurate SRHR information, especially by health programmes is not always a given. We are creating an information void when people search for health information but cannot find it from a credible source --> Update, optimize and expand SRHR digital content with all current partners for a mobile-first world and consider accessibility and usability?improvements.?(make a checklist!); and provide tools to promote active online community engagement on SRHR topics, without putting the institution at the center.
• SRHR information does not reach all communities equally. Access to information is also mediated by structural, social and economic factors, which need to be taken into account when developing interventions to improve equitable access to health information. --> develop tools to rapidly assess the information environment related to SRHR and how it might affect specific population segments, eg parents, educators, teens, and then use this to better engage and deliver services to them.
• Promoting individual literacy across digital, media, information, science and health domains is critical for an individual’s ability to understand and use SRHR-related information effectively. --> Develop capacity building modules for health workers and their clients on how to understand and assess SRHR-related information, detect misinformation, and how to talk to others on SRHR topics; and leverage existing networks and promote peer-to-peer approaches (online and offline) to address SRHR misinformation more effectively

These are just some ideas, let me know if you have more!

Links to headlines

PS: If you're curious about the articles behind the headlines in this blog, see below