Why we should involve more young people in health research
It is crucial to empower and support young people to shape health research, and this is why.
To align with Wellcome's new strategy, the Education and Learning team is now wrapping up its work on improving science education in the UK. Our new focus is supporting a pivot towards involving young people – aged between 10 and 24 – in the research agenda for three worldwide health challenges: mental health, infectious diseases and global heating.
Why focus on young people?
Young people are disproportionately affected by these health challenges and will have to live with them for longer, but they are often not included in research.
- There are 1.8 billion young people in the world today.
- 40% of the global population is under 24 (for example, there are 600 million people under 25 in India; 42% of the population of Nigeria is under 14).
- Nearly 90% of the population aged 10-24 lives in low- and middle-income countries.
Often considered the 'next generation' who we must prepare for society and the workforce, involving young people in the here and now is equally critical. Young people’s relationship with science has always been of concern to Wellcome, but the pandemic makes it even more imperative that they have agency in shaping the post-Covid-19 world.
What we've learned about involving young people in health research
We commissioned Dalberg Advisors to conduct a study to explore the role, benefits and potential of young people’s involvement in health research. We were interested in youth involvement along the whole research chain: from influencing questions and research design, to data collection and advocating for the issue.
We found that the vast majority of published health research that involves young people occurs in high-income countries. Young people are most frequently involved in research design and data collection, rather than agenda-setting and discussing and sharing findings. And they often don’t have much control in the projects they participate in.
Young people's involvement in health research benefits the research, the young people themselves, and their communities.
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There are, of course, many challenges to overcome to realise the potential of this type of involvement. To begin with, there are very few opportunities for young people to get meaningfully involved in health research and there is a lack of standardised language and methodologies for documenting the impact of such research. The working culture of teams and organisations is not always conducive to young people's needs and capabilities. Cultural norms, resource constraints and systemic inequities all pose barriers to being inclusive and involving a diverse range of young people.
The study resulted in a number of recommendations to address these challenges:
- Develop a new standard among funders on how young people’s involvement in health research should be supported.
- Develop and mainstream best practices.
- Generate and disseminate more evidence.
- Improve the monitoring and evaluation of youth involvement in health research.
- Strengthen networks focused on involving young people in health research.
- Involve young people in internal agenda-setting and funding decisions.
What happens next?
Alongside this research, we’re supporting a number of pilot projects to help us understand how to best involve young people in Wellcome’s research. Projects include:
Youth Against Antimicrobial Resistance is a multinational effort – we’re working with partners in Vietnam, Nepal, Thailand and Kenya to develop a learning framework that supports children and young people’s understanding of antimicrobial resistance.
Planet DIVOC-91 is a comic-based initiative for young adults to offer their perspectives on how they might tackle issues around a fictional pandemic on an alien planet. It's yielding insights on how a diverse group of young adults are experiencing the very real pandemic, and their ideas for responses.
Climate and health
With Restless Development, we’re co-creating a one-year pilot project in Zimbabwe to identify how young people can be supported to become changemakers and leaders in the dissemination and advocacy of climate and health research.
We have also commissioned Save the Children International and the Stockholm Environment Institute to conduct a landscape analysis of young people's involvement in climate and health in six countries: Bangladesh, Indonesia, Vietnam, Ethiopia, Kenya and Senegal.
We've recently published a report on mental health: listening to young people and learning from Covid-19.
We're also currently in the process of appointing an organisation to help us explore how young people connect with mental health science in four countries in Africa and Asia.
We hope that these projects will help Wellcome identify trusted in-country partners for this type of work, and develop models for how to effectively work with and empower young people.
Stay tuned to see how this work develops and grows over the coming years.