Penta has been developing models to ensure the voices of children and young people are actively present in our research. This exciting work is progressing and developing, as we build on what we have learnt and look to a future where research is done in partnership with patients and the community they represent.
What is youth engagement?
Youth engagement is more than having one or more young people ‘present’ at a meeting. At Penta we are developing models that build the knowledge of the young people most affected by our research, and create ways to ensure they have a meaningful input into the development and delivery of research that impacts on their lives.
We also acknowledge the importance of public conversations about health and science, and are working towards empowering young people to better understand science and research and to use various mediums to share this knowledge with their peers and their community.
Why is involving young people important?
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 us this means including pregnant people, adolescents, children and all underrepresented communities in the development and testing of life-saving medication.
In 2020 we worked with a group of global youth activists as part of the CIPHER Young People’s Project. They created this video to explain why involving young people is critical for better outcomes for organisations.
Delivering youth engagement in research
We are currently working on different models to support the meaningful engagement and involvement of adolescents in global research and sharing scientific findings and data.
Our work is grounded within the ethos and framework of Community Development practice, working with and being led by the groups we support to engage in research.
Quality Standards
The Quality standards for adolescent participation in clinical research decision making make it possible for others to improve how they conduct research.
Youth Friendly Quality Standards
A youth friendly version of the Quality Standards is also available so young people involved in trials can hold researchers accountable.
Youth Trials Board
Our Youth Trials Board (YTB) is a model developed to train and support adolescents to be able to be active partners in research trials.
Young Reporters
Our Young Reporters project is a model developed and piloted to democratise science and support better understanding of research.
Advisory Boards
Our Advisory Boards was set up to ensure that the different voices and experiences of young people are heard, rather than just a few representatives.
Resources to support youth engagement
Through multiple projects and activities we have developed tools that support young people to understand the basics of research so that they can then engage in a deeper and more meaningful way in conversations with researchers.
What is GDPR?
What is a PK day?
We are also happy to share interactive training modules modules below to be used with children in clinical trials. We strongly advise that these modules are delivered within the framework set out in our Quality Standards. For true youth engagement and participation, institutions and researchers need to be properly engaged in the work and willing to work with the young people.
Understanding HIV
This module offers a set of activities to support young people to better understand HIV and how their medication works.
What is a clinical trial
This module offers a set of activities to explain what a randomised clinical trial is and how certain elements of this work.
What is social science
This module uses the learning from module two to show how social science works with clinical trials to support better understanding of how people on clinical trials feel and behave.
What is advocacy
This final module should support the young people to take their learning about research and think about how they can put this into practice as advocates.
Should you wish to discuss experts coming to build capacity and knowledge within your institution or team, please contact us at info@penta-id.org.
Consultancy and contacts
We are always interested in sharing our work, supporting capacity building with people who are running similar programmes and developing partnerships to explore new engagement models. To discuss any of this, please contact us at info@penta-id.org.