This article was written by Magda Conway, Mercy Shibemba and Lungile Jafta, Penta Foundation Youth engagement & participation group, UK and South Africa. It is taken from Penta’s 2022 Social Report.
The World Health Organization states that: “Health is a fundamental human right. Health equity is achieved when everyone can attain their full potential for health and wellbeing.”
For Penta this means including pregnant people, adolescents, children and all underrepresented communities in the development and testing of life-saving medication. We know that paediatric and adolescent drugs trials take too long and can be low priority or considered ‘high risk’ compared to their adult counterparts. Even where these trials are running, many communities are under-represented or simply not included. Barriers to their participation include geographic, economic, racial/ethnic bias, legal, cultural and linguistic factors. There are sub-groups of adolescents, who are already stigmatised and excluded from societies, such as LGBTQ+ communities or refugee/asylum seekers who may be excluded from paediatric trials.
This is something we are profoundly aware of, and we have established the Penta Youth Engagement Team where we are developing models and practice to actively engage not just children and adolescents in the research that affects their lives, but also to ensure these marginalised groups are active partners in the development and delivery of research. This is a huge task, as health inequality and discrimination in healthcare and research are systemic.
We have grounded our work within the ethos and framework of Community Development practice, working with and being led by the groups we support to engage in research. We uphold the principles of Youth Participation, challenging tokenism and working with researchers to see how to make their studies more accessible to children and adolescents, so they can be meaningful partners and have real influence in decision-making. We are learning from what has come before us, shaping this to fit the field of research and in particular, clinical trials and cohort studies.
To address Health Equity and inequality, as well as making research more accessible, we need to be building the knowledge, understanding and confidence of these groups of adolescents, so they are equipped to enter the environment of research and have meaningful engagements. This must include underrepresented communities. We are actively seeking out and putting in place support packages so they can engage, which includes support that acknowledges their socio-economic situation and the time these experts are giving. A core lesson we have learnt is if you make the effort to find and engage these adolescents, they have a voice and they want this voice to be heard.
What COVID-19 showed us was that you cannot leave the public behind in discussions on science and health, particularly on infectious diseases. Research can be highly nuanced, science does not exist in a vacuum of black and white and there are many, many shades of grey. But this does not mean research and the science behind it cannot be explained simply and clearly, engaging rather than excluding communities. Poor communication of science leads to avoidable morbidity and mortality, and therefore must be addressed. We believe that although we still have some way to go, we are definitely on the right path to do this.