The impact of tokenism and potential exploitation of minorities on community engagement: Models for for sustainable and genuine co-design

‘She emphasised that although she is physically disabled, her mind is still intelligent, and that often people are not genuinely interested in the stories and experiences of these women or in helping them – they just want a token photo and then leave. It’s all very calculated. This was a misconception in the interviews today that we had to address, to reassure women that as well as their financial compensation, this research would be going to government and policy makers to improve healthcare access and attitudes for them. ~ Reflections from a WISH study participant interview’.

Community engagement is a central tenet to health research, healthcare provision, and enacting effective and meaningful change for service users and stakeholders (1). Multiple frameworks have been proposed to ensure that this is approached with sensitivity and tact, and to produce genuine collaboration (2). 
However, this does not always translate in practice. 

Tokenism in health refers to the inclusion of minority or typically underrepresented groups for symbolic purposes as opposed to genuine patient engagement (3). The detrimental impacts of tokenism are well documented, and include increased stereotyping, isolation of tokenised groups, poorer understanding of health needs, and ultimately, worse health outcomes (4,5). 

In research, the researcher-participant relationship is one that is fundamentally based on mutual trust and understanding. When participants feel exploited or are sceptical of the intentions of the research team, this can have profoundly negative consequences for rapport and future co-production (6).

Furthermore, in clinical practice, it is well established that minority groups face an increased number of barriers regarding access to healthcare and medicines (5). Acknowledging the role that charities and community-based organisations have in advocating for access to new efficacious medicines and services is essential to improving the health of these populations (6). As such, involvement and collaboration between the public and healthcare providers to bridge this disparity should be considered key (6).

Sociopolitical tokenisation and exploitation of minorities is not an uncommon tactic for ‘aspiring changemakers’ wishing to ‘tick the inclusion box’ (7). Whether as an innocent mistake, or a performative task for those more opposed to the potential disruption associated with change, this can have detrimental impacts. Valuable opportunities for innovation and quality improvement for these groups may be lost and may impact future relationships with well-meaning initiatives. 

So how can genuine inclusion be achieved, and how can scepticism be overcome? 
For many minorities, scepticism and reluctance to trust in outreach and research teams can be present long before initial recruitment or engagement processes. This might be as a culmination of multiple previous negative experiences or ‘accumulated distrust’ (8). 

From a healthcare perspective, there is a wealth of literature describing the relationship between vaccine hesitancy and poor medication adherence in minority groups, and mistrust in health and government institutions (8-11). This is a complex interplay of multiple factors, including historical exclusion and experimentation, colonialism, underfunding, and poor cultural sensitivity, and is particularly noted in low- and middle-income countries (9). 

Recently, this was brought to public attention during the COVID-19 pandemic, where mistrust played a key role in the rise in vaccine hesitancy (9). Addressing causes of hesitancy is crucial, especially where vaccines present such a critical pharmacological tool in fighting the burden of diseases such as malaria, polio, and measles. 
Similarly, poor medication adherence has been attributed to distrust in healthcare services and professionals. For diseases such as HIV, where anti-retroviral therapy is a key pillar in management, race-based medical mistrust has been shown to significantly predict reduced medication adherence (10). 

In these instances, it is essential to rebuild trust and establish a rapport as an ongoing consultation rather than on infrequent occasions or as an afterthought. This could prevent a self-perpetuating cycle of worsening health outcomes and greater scepticism of the most affected and underserved groups (12). 
Creating a sustainable and holistic approach to co-design can be achieved in multiple ways, illustrated in the following examples. 

A prime example of authentic community engagement is an initiative headed by the Resource Group for Education and Advocacy for Community Health (REACH) (13). An organisation focusing primarily on tuberculosis (TB) and based in India, in 2016 REACH launched a community accountability framework (CAF) for its ‘TB Survivor to TB Champion’ programme. These champions are crucial in advocacy and engagement and were trained to meet with people living with TB to administer the ‘bottom-up, community-led’ CAF model. This encompasses three main elements: identifying gaps, discussing and identifying potential solutions, and implementation of solutions through individual or health system collaboration. 

From this method, a driven and experienced team has emerged. Reflecting on the program, this form of engagement has been used to address several gaps including delays in diagnosis and starting treatment, delays in testing, inconsistencies and interruption of TB treatment, and dosing errors (13). Now with 45 district chapters and many more networks, the power of peer mentoring and support has impacted countless people across India. 

In Kyrgyzstan, a different approach to community engagement was taken (14). In 2014 a concept note for HIV/TB harm reduction strategies was rejected by the Global Fund, with concerns that there was limited understanding of community priorities and funding. Consequently, joint consultations with stakeholders were conducted, to create a more open discourse around HIV and TB challenges and harm reduction. This involved speaking to key populations most at risk of HIV/TB, receiving comprehensive feedback on the current harm reduction proposal by a support hub from the International HIV/AIDS Alliance, and continuous dialogue with civil society organisations. 

From this, six new priorities emerged, pertaining to programme coverage, access to HIV services and treatment, national standardisation of harm reduction services, budgeting, mitigation of human rights violations, and quality improvement. Critically, these shaped the new proposal which was accepted in 2016. Thus, the value of engagement for priority setting, and for investment, resource-pooling and technical assistance is clear. 

Another important facet of community engagement is interagency coordination: a key focus in the Cameroon Red Cross (15). Following reflection on disjointed, disconnected working with government agencies and NGOs, they made active efforts to work more collaboratively, joining national working groups for health promotion and protection. Equally, events and training opportunities from the Red Cross have been opened to the agencies in these networks, for workforce and health system strengthening and improvement. These were vital to tackling COVID-19 and subsequent outbreaks of cholera and mpox in Cameroon. 

The benefits of this coordinated approach have been evident. Firstly, understanding how the team can work synergistically with existing services, initiatives and outreach to fill gaps in health provision rather than introducing repetition. Secondly, learning from the experience of other groups and their insights on implementing new programmes. And finally, having a unified, well-trained workforce that understands cultural sensitivities and the values of the community. 

At the Infectious Diseases Institute (IDI) in Kampala, these principles of peer-mentoring as in India, consultation for priority setting similarly to the Kyrgyzstan grant, and interagency coordination seen in Cameroon have been combined and utilised to establish the institute as centre for community partnership. 

The Community Advisory Board (CAB), chaired by Betty Kwagala, a disabled woman living with HIV, is an example of establishing an ongoing, united forum for innovation with the community and underrepresented voices. Regular consultations and research updates with multiple community representatives and stakeholders allow the CAB to be a driving force underpinning the IDI’s research (16). 

This has been crucial in ensuring that the pursuit of knowledge and understanding of complex health problems has originated from community-based insights, and that subsequent advances and solutions are tailored to meet the needs of those underserved populations. 

Most recently this has been instrumental for multiple trials focusing on improving health for pregnant and breastfeeding women living with HIV: the Maternal and Infant Lactation pharmacoKinetics (MILK), and the DOLPHIN study groups (17-19). 

These groups are both included in the community engagement work under At The EQUATOR (ATtaining EQUity of Access TO Research) supported by Wellcome funding. They were established to address the poor representation of pregnant and breastfeeding women in health research, particularly in pharmacokinetic studies (17). Priority conditions have included HIV, TB and malaria and emerging community priorities that will be explored next include antibiotics for maternal sepsis, postpartum depression and highly infectious pathogens such as Ebola (20-23).  This is essential to ensure that access to healthcare services and treatments for this population is maximised, to meet their needs and ensure optimal health outcomes. 

However, a key step towards inclusion was engagement: ethical, logistical and personal concerns were identified as major barriers to recruitment (17). Having a channel for the community to voice concerns and participate in study design provided solutions to overcome these barriers. 

During meetings, active discussion and feedback sessions allow persons with lived experience and service users to shape future directions, suggesting amendments, sharing expertise and proposing new research themes and ideas. These concepts have also been explored through several participatory projects focused on collaboration for health education tool development, language use in health research, and the use of creative arts to understand community perspectives in the citizens' jury approach (24-26). 

Furthermore, a peer-mothering model is pivotal in these studies (17). Not only are peer-mothers central figures and contributors in the CAB, but they are also invaluable to research outreach, accompanying and leading on all field days and excursions. Their personal and lived experiences make them best placed to understand and discuss demands and challenges with affected persons. 

As an ever-evolving team, the pursuit of both academic rigor and community impact has been spearheaded by lifelong learning through as many varied channels as possible. The expertise of the community is undeniable and in future years as the IDI forges new networks, this form of engagement and co-design will undoubtedly remain a prized way to exchange wisdom and hopefully grow a sustainable, cohesive force for positive change. 

Being born and brought up in the UK and having access to higher education has afforded me many privileges with regards to my own access to healthcare and understanding of health information. However, both as a medical student, and woman of colour living with a long-term health condition, these are issues which I am deeply invested in and continue to explore and reflect on, both personally and professionally. 

References: 
 

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