What Went Wrong and Right During Mpox? Activists Share Their Insights at First Roundtable of ESRC IPPO Mpox Project

Knowing and Evidencing Mpox: A Rapid Policy-Focused Study of Community Organising, Communication, and Vaccine Engagements is an ESRC-funded project investigating the recent Mpox outbreak.  The project sees the International Public Policy Observatory at UCL collaborating with colleagues from the Universities of Edinburgh, Bristol, and Manchester, and the UK Health Security Agency to fill previously-identified social science research gaps related to the outbreak.

In December 2022, the project began its primary data collection phase by hosting the first of our professionally-facilitated “deliverative fora” roundtable discussions for those affected by the outbreak.  Our first roundtable focused on the experiences of activists and the third sector and featured contributions from those from the United Kingdom, Canada, and the United States.  Here are some of the key insights from the discussion:

Different communities experienced the outbreak differently

While the outbreak mainly affected Men who have Sex with Men (MSM), a consideration of how “the community” responded should take into account the differing ways in which many different communities were affected.  While some communities responded well through information-sharing, support, and exchange, there was a feeling that others, particularly marginalised groups, were often left behind.  Understanding what happened during the response to the outbreak and making recommendations for future scenarios should take account of these different experiences and proactively work to engage marginalised communities.

Trust should be earned

With many roundtable attendees active in MSM third sector organisations, the experience of HIV/AIDS informed many of their framings and understandings of Mpox.  In particular, failures and attendant issues of homophobia by governments during the HIV/AIDS crisis often saw trust in such institutions during Mpox viewed with this historical context in mind.  In the US, previous work by the CDC to restore trust after US government failures during the 1980s was also complicated by the rise of right-wing populism associated with the election of Trump.  This posed challenges in terms of community engagement with government messaging, with the importance of proactively engaging with communities in order to earn trust being emphasised.

Clear communication is key

The outbreak provided challenges around both stigmatisation and the fear of provoking stigmatisation.  Attendees detected a reticence to sometimes say that the outbreak was largely concentrated in MSM by government officials, with it being claimed that this may also have occurred in some communication by third sector organisations serving the MSM community.  Potential recommendations around future communication should take into account the need to both minimise potential stigmatisation, as well as communicating to the intended audience clearly and honestly.

Social media played a positive role

The grassroots mobilisation of parts of the MSM community on social media was one of the success stories of the outbreak.  Influencers and other users rallied to share information on diagnosis, symptoms, and seeking care, as well as promoting vaccine engagement.  While this by no means reached all communities, there was a sense that social media stepped into a void where, in many though not all country contexts, government communication were thought to be sometimes lacking.  Recommendations for future situations should take into account the positive role that the medium and those who used it played during the outbreak.

Providing information worked

Anecdotal evidence from attendees suggested that non-judgemental messaging around risk and other advice was impactful – although there was a lack of agreement as to how much behaviour ultimately changed.  It was also noted that future communications strategy based solely on prioritising behavioural change would likely be less successful than the open provision of advice and information.

Get Involved

If you have been affected by Mpox and/or are involved in the response to the outbreak and would like to have your voice heard by participating in a roundtable, please e-mail Jeremy Williams at [email protected].  Further roundtables and interviews will take place in January 2023, with attendees given the option of their contributions being anonymised in any public-facing material.