Researcher involvement information

What to consider when working with your rheum.

Planning and supporting involvement

It takes considerable resource to set up and establish a young people’s group, so bear this in mind before starting to set one up.
Be mindful of young people’s time constraints (i.e. school, college, family, social life) and arrange meetings accordingly (i.e. not during exam periods; afternoon rather than morning meetings etc.). Ideally, ask the young people involved what’s best for them.
It’s important to try to attract a good mix of young people across the social classes including both genders, young people from ethnic minorities, young people with disabilities and marginalised young people such as those in care.
Most groups recruit continuously, which mitigates for young people leaving. Be mindful of young people approaching the upper age limit and support their “transition” out of the group.
It’s always good to offer further opportunities, if possible, when young people get older – e.g. adult advisory groups, volunteering opportunities etc.
Consider how to maximise accessibility, safety and ethical standards.
For further information for researchers who want to include great PPIE in their work, please take a look at our Versus Arthritis PPIE Hub.

Be flexible in your approach – often it is more productive to have a mix of short and long term aspirations to maintain engagement.
Listen to what the young people really want – do not assume you know. Clarification of their views if required should be done in a non-judgmental way. Professionals should consider the words they use and avoid the use of jargon.
Show young people that senior researchers are really interested in hearing their views and will take them seriously.
It’s important to reward and incentivise where appropriate (e.g. social events, certificates, awards) and provide necessary information for the young people to include in their career portfolios etc.
Find a facilitator who is welcoming, and an excellent communicator with young people. Make this person a long-term point of contact for the young people so they can develop a positive relationship over time.
When a group first meets think about how you can help the participants to introduce themselves and build trust and openness between members of the group e.g. ice-breakers etc.

Ensure that the young people understand that research is a lengthy process and that there are often no immediate tangible benefits. Also not all ideas or projects will succeed or be feasible or practical.

It is important to note that Your Rheum is not intended for the following:

To be a source of recruitment for research studies – although our members may decide to be involved in studies, this is not the purpose of the Group and so should not be the aim for involving the Group in your research. In some cases participation in a study may even prevent a Group Member from being involved in the Group activities due to conflicting interests.
To be used as a resource to obtain funding only – although we appreciate PPI is an important element of obtaining funding, we want the Group to work alongside researchers in a partnership to benefit all parties.