It is two weeks until our first BANNAR YOURR Young Persons’ Advisory Group (YPAG) and I thought it would be useful to firstly introduce myself (hello!) but also explain what an advisory group is actually all about. If, like me, you hadn’t heard of the term until recently you might be left wondering what joining the group would actually involve.
So, firstly, my name is Katharine and I am one of the people setting up the YOURR Group. I work for the Public Programmes team and I’m employed by the University of Manchester. I have only been working for the Public Programmes Team for the last couple of months and since then I have learnt loads about Public Involvement, Engagement and Advisory Groups.
Here is my quick guide on everything you need to know!
An Advisory group is a type of activity called ‘Patient Involvement’ and so it is probably useful to start by looking at what Patient Involvement means. This picture that I grabbed from Twitter (Source @eupatientsforum) shows it quite nicely….
If you were to take part in a clinical trial by giving some blood, for example, this would be research being done to you (and we call this Participation). Patient Involvement is about conducting research WITH patients, so getting you involved in actually setting-up, running and advising on research.
So Advisory Groups are basically exactly what it says on the tin, they are groups of people, sometimes a random selection of members of the public, sometimes people with specific health conditions (like the YOURR group) that advise…on research. Groups can advise on all stages of a research project as shown in the diagram below:
For example imagine you are a researcher who wants to do some research into how rheumatic conditions affect young people at school or college. You might start by going to an advisory group of young people with these types of conditions to ask them what topics are most important for you to research. This kind of input can help you establish a relevant research question:
e.g. How does having a rheumatic condition affect young people’s abilities to do coursework? or Do young people with rheumatic conditions receive enough physical and psychological support in school/college? (These are just examples).
You then might want to speak to an advisory group to discuss how best to run the research project e.g. who you should speak to, when the best times to speak with them, what kind of questions would be good to ask – this could help create a study protocol.
Advisory Groups can help design all kinds of information sources e.g. advise on information leaflets, website or mobile apps explaining a study. You could then use these to give to your research participants so they knew exactly what the research study was all about and what they were getting involved in.
In the later stages of research projects, an advisory group might help you to interpret the data you have collected correctly, or actually help you to write your research findings up.
The types of activities advisory groups can get involved with are huge and so being part of the group will hopefully give you a wide range of experiences that allow you to input into research that means something to you (rheumatology research) as well as giving you an insight into how research is conducted.
Why are Advisory Groups Important?
There are loads of reasons but a few important ones are:
- They ensure that the research questions being asked are relevant
- They make research projects easier to understand for participants
- They help to make sure data is interpreted correctly
- They give different view points on how to conduct research
- They ask questions researchers might not have thought about
If you want any further details about the group get in touch with me firstname.lastname@example.org
Hopefully see you in Manchester on the 15th for our first meeting!