Community Led Health Promotion to Counter Stigma and Increase Trust amongst Priority Populations: Lessons from the 2022-2023 UK Mpox Outbreak

"The 2022-2023 UK mpox outbreak has shown the necessity of co-developing public health messaging with affected priority populations to produce persuasive, accessible, informative and non-stigmatising public health communications."

Stigma, lack of trust in authorities, and poor knowledge can prevent health-seeking behaviour, worsen physical and mental health, and undermine efforts, such as vaccination, to control transmission during disease outbreaks. These factors are particularly salient with diseases such as mpox (originally labelled monkeypox), for which 96% of cases in the 2022-2023 UK outbreak were identified among gay, bisexual, queer, and men who have sex with men (MSM). In the early days of the UK mpox outbreak, public health bodies raised concerns over misinformation and potentially stigmatising media reports and online discourse. In that context, this study compared perspectives from national, regional, and community-based stakeholders on the strengths and weaknesses of the UK mpox communication strategy and its influence on experiences of stigma and health-seeking behaviour in Liverpool, UK.

Mpox cases were first confirmed in England by the UK Health Security Agency (UKHSA) in May 2022. Sexual health services played a key role in the UK's outbreak response, including case detection and the distribution of preventative vaccines to at-risk groups with multiple sexual partners or participating in group sex. Healthcare providers were instructed to conduct a risk assessment and contact tracing for symptomatic mpox cases, and to advise patients to self-isolate until no longer infectious. Despite anticipated stigma-related challenges, the UK implemented a successful outbreak response, with national reports showing a dramatic fall in mpox case numbers after a peak in July 2022. Increased awareness of mpox leading to behaviour modification and high uptake of the Imvamex vaccine among at-risk groups indicates the presence of effective public health messages and campaigns able to counter stigma, reduce risky behaviours, and encourage vaccine uptake. Yet, some commentators have argued that success was mostly achieved through LGBTQ+ community-led efforts.

Research activities were informed by the Health Stigma and Discrimination Framework by Stangl et al. The framework articulates the stigmatisation process as it unfolds across the socio-ecological spectrum in the context of health. The domains of the framework connect drivers of stigma with health and social impacts and underpin this process with individuals, organisations, and institutions. 

This study used a participatory health research approach, which aims to maximise the participation of those affected by the topic of the research in the research process. Primary sources of data were interviews with key informants selected for their involvement in the mpox response nationally, regionally and in Liverpool, and participatory workshops with priority populations (gay, bisexual, queer and other MSM) in Liverpool. Data were analysed using a deductive framework approach, building on the Health Stigma and Discrimination Framework.

Broadly, key informant interviews (n = 11) and five workshops (n = 15) highlighted prevalent reports of anticipated and experienced stigma due to mpox public health messaging alongside high demand and uptake of the mpox vaccine and regular attendance at sexual health clinics. Respondents believed the limited impact of stigma on health-seeking behaviour was due to actions by the LGBTQ community, the third sector, and local sexual health clinics. 

Of the workshop participants, six reported to have had the mpox vaccine during the outbreak, four had not been vaccinated, and five did not disclose their vaccination status. Only two participants expressed a degree of hesitancy due to low levels of trust in the pharmaceutical industry and low perceived risk of mpox. Respondents provided anecdotes of priority populations travelling to other regions from the one they resided in for the vaccine, advocating for better access to vaccines and sharing information on vaccine availability across multiple platforms. The mpox response in Liverpool was reportedly challenged by a slow and under-resourced national vaccination campaign resulting in supply shortages and restricted access; limited diagnostic capacity and slow turnaround of results were also noted from regional informants but less prominent. Several respondents, including key informants, questioned whether vaccine supply shortages were an act of discrimination against the LGBTQ + community. Demands for the vaccine were angry in tone.

That said, the community reportedly mobilised to help others circumvent regional barriers to vaccine uptake, including the online booking system and restrictive eligibility criteria. High vaccine demand and uptake appeared coupled with notions of collective responsibility and peer-to-peer encouragement to get vaccinated. Key informants who attended the 2022 Manchester Pride event provided anecdotes of people requesting to be vaccinated on their forearm as a clear signal to others that they were protected against mpox.

However, key informants from the LGBTQ+ community and primary healthcare felt their collective action to tackle mpox was undermined by central public health authorities citing under-resourcing, a reliance on goodwill, poor communication, and tokenistic engagement. Mpox communication was further challenged by a lack of evidence on disease transmission and risk. This challenge was exacerbated by the impact of the COVID-19 pandemic on the scientific community, public perceptions of infectious disease, and trust in public health authorities.

Respondents reportedly witnessed a resurgence in fear and discrimination directed towards the LGBTQ + community because of the mpox outbreak and associated sensationalised media reports and stigmatising online discourse. Key informants spoke of a difficult balance between using data to direct limited resources to at-risk groups and the potential to generate negative associations between disease and sexual identity. Communication assets developed by central agencies, while commended for using simple and concise language, were at times described as stigmatising, generic, and neither engaging nor persuasive.

Other key informants who warned against over-communication, resulting in distorted public perceptions on risk and information fatigue. Considering reported shortcomings of mpox communication by central agencies, some community organisation informants felt opportunities to co-develop messages and communication strategies with affected communities were missed. They took it upon themselves to design their own communication strategy and assets in a way they felt would resonate better with the local community. Workshop participants reported local colloquialisms, together with humour in messages, helped facilitate engagement, especially in a post-pandemic context where participants were fatigued by public health and outbreak communications.

There was a common sentiment across respondents, that given the right information, people are generally willing to behave in a way that is protective of their health and the health of their community. Some recommendations:
 

• Study respondents voiced preferences on message content to be concise and factual; unambiguous language; transparent and honest about evidence base; risk explained in terms of behaviour not social identity; and inclusion of patient perspectives.
• The tone of the messages content should be anti-paternalistic, guiding people to assess their own risk, with clear instruction on prevention, diagnosis, and treatment.
• Respondent preferences for message execution included accessibility to all people with varied communication needs and delivery through multiple avenues online and offline, with layered tiers of information to avoid over- or under -communication.

In general, the study found that LGBTQ + community and local sexual health clinics took crucial actions to counter stigma and support health-seeking behaviour, including vaccination, during the 2022-2023 UK mpox outbreak. Empowered affected communities were pertinent to the UK's successful outbreak response. These communities were able and willing to share mpox information and patient experience, advocate for improved access to health services, counter stigma and misinformation, and encourage vaccine uptake among peers.

"Lessons from rights based and inclusive community-led approaches during outbreaks should be heeded in the UK, working towards more meaningful and timely collaboration between affected communities, primary healthcare, and regional and national public health authorities."