Patient Involvement
Project New Generation (PNG+)PNG+ is a group of young people living with HIV from across the Russian Federation. They were part of REACH and were there to give a voice to the young people whose data was analysed in the cohort study. They learnt about the study and produced materials to share with the public and their peers.
Who is a PNG+?
PNG+ is a group of young people aged between 15-19 (at the point of becoming a member) that includes those affected by HIV, TB and/or HCV. In REACH there were two PNG+ groups.
There were a minimum of 14 young people involved across these groups. They worked together on set tasks, activities and also acted as champions for others, giving a voice to their peers affected by HIV, TB and/or HCV.
Implementing PNG+ in REACH
PNG+ is a result of the YTB Project which spent a year developing an interactive, youth-friendly, activity-based training programme with young people living with HIV across four different countries. Russia is only the fifth country in the world to have an adopted this model, with the training having been modified for REACH. It focuses on a cohort study and the three different health conditions.
All PNG+ members received training that covered:
- Understanding HIV, HCV and TB, their similarities and differences
- Understanding what a cohort study is and how it works
- What is REACH and what are the roles of PNG+ members within REACH
PNG+ Activities
Over the two years of REACH the PNG+s undertook specific activities which included:
- Developing patient and public information about what REACH was and what it planed to do
- Developing aspects of the REACH website
- Producing patient and public friendly materials that reported what REACH found out
- Looking at ways to engage the wider community in understanding and taking an interest in REACH
PNG+ members were also able to engage with additional activities. When REACH concluded we had a set of youth-created online and paper resources which explained the project and its findings in a clear and public-friendly way.
The REACH study described by PNG+
PNG+ created information and graphics to explain to children, young people, families and the public what a Cohort Study is and more details about REACH.
REACH is a Cohort Study. A ‘cohort’ is a group of people with something in common like a sports team or musicians.
The cohorts REACH is studying are children, young people and pregnant women with HIV, HIV and HCV (called co-infection) or just with HIV, HCV or TB across 5 medical centres in Russia
REACH has brought together all the ‘data’ (stories) of these groups, and is looking at this data (analysing it) to find patterns so they can have a better understanding of HIV, HCV and TB. They are finding out about the different illnesses children might get, how the medicine works and what happens to children over a long period of time.
