Bristol Young Person's Advisory Group
The Bristol Young Person's Advisory Group started to hold its meetings online so that young people can continue to influence how research is carried out.
The Bristol Young Person's Advisory Group (YPAG) is a group of 40 to 45 young people aged 10 to 19 with an interest in healthcare and research. Some of these young people had been recruited through schools and after-school clubs in areas of Bristol more likely to experience socio-economic disadvantage. Others have been recruited through the convenience of knowing their parents or their parents participating in other involvement activities.
The role of the YPAG is to critically evaluate the way research about young people is done. It allows researchers to have their research ideas, information sheets or questionnaires checked by the people they plan to research. The group used to meet in central Bristol 6 times a year, with up to 4 researchers presenting their work each time.
What we did
Until the lockdown came into force in March 2020, we had been running regular sessions where researchers could consult the group on a range of topics. These sessions were in person and usually lasted 5 hours. The young people were paid for their participation and provided with lunch and snacks.
Despite the COVID-19 pandemic, the need for researchers to have their ideas, surveys and study documents scrutinised by young people remains. Zoom appeared to be favoured for online meetings and, with young people now locked in their homes, we decided to make the switch to online YPAGs.
Luckily, most of our communication with members and parents has been via email so contact wasn't an issue and we already knew most people had access to either smartphones, laptops or tablets.
Although it was still early days of lockdown, there was some emerging guidance available about how to carry out online meetings and more becoming available every day.
The first online session we ran was attended by 5 young people and lasted an hour.
At the time of writing, there have been about 18 online YPAG meetings with different researchers on different subjects. The young people have been consulted on issues such as:
- the acceptability of wearable medication adherence devices
- the use and acceptability of low friction burns dressings
- designing a survey about sex and relationships education in schools
- the effects of isolation on mental health
Some of our young people have shared their experiences in a blog comparing our previous face-to-face meetings with our current online meetings.
What worked well
Providing opportunities to participate online was quick and easy to set up. It also facilitated the participation of a wider geographical spread of young people and appears to have improved the diversity of the group.
We decided to have shorter meetings with a smaller group of young people (usually 4 to 6 members) and this has allowed for deeper discussion and less chance of fatigue or boredom.
Cost savings from using Zoom have allowed us to offer greater financial incentives for participation.
From our experience, it is useful to have a person on hand to follow up with any participants who don't turn up to meetings or who drop out of calls unexpectedly, to support them to participate.
Previously, the young people did not like to take part in icebreaker activities in the face-to-face meetings. However, they are much more popular now that people are physically separated and they are a chance for the group to warm up before the formal part of the meeting begins.
There has been lots to learn from the move to online meetings and this learning has led to the development of new policies and practices to support our new way of working.
In the first online meeting, for example, a young person was already logged on as I arrived on the call, creating a potential safeguarding issue. We now keep participants in a 'waiting room' until there at least 2 adults present, one of whom has an enhanced criminal record bureau certificate. We don't allow young people to join without a parent present (initially) if they are under 16 years.
The move to online meetings has also made it a little difficult to achieve the same level of active engagement among group members, with less opportunities for bonding - such as tea breaks or lunch to chat over. We have also had to work out how to encourage participation in a way to make sure that everyone has a say and people aren't spoken over. We often ask people to speak but give them the option to say that they have nothing to add. Sharing as much information as possible ahead of the meetings definitely helps.
While necessary, using smaller groups for online video calls has also made it more challenging to provide regular opportunities for participation for such a large number of active members.
Online meetings aren't for everyone and a few members have left the group during COVID-19 as they didn't like participating online.
We are currently exploring actions we can take to include children from more disadvantaged and low income backgrounds in our work, such as providing them with mobile devices and access to Wi-Fi or data.
Mike Bell (Patient and Public Involvement Facilitator, National Institute for Health Research (NIHR) Applied Research Collaboration West)