The importance of Scientific Conferences

Posted on by Your Rheum

In a few days time, on Tuesday 29th November, members of Your Rheum will be attending and speaking at the British Society of Paediatric and Adolescent Rheumatology (BSPAR) conference.

This is great, but has it left you wondering what the point of a conference is?

If so, read on…

I thought I would consult the font of knowledge that is Wikipedia to see what they had to say on the matter:

‘A scientific conference is a meeting of scientists of a certain research field, intended to bring them together to learn about recent developments, present new data to each other and discuss it critically, and to socialize and get to know new colleagues.’ [1]

I think this sums it up quite nicely. Conferences usually follow a programme of talks and workshops designed to keep scientists up-to-date with current research in the field.

You can have a look at the BSPAR programme here.

But where do normal everyday non-scientists fit in to all of this?

Well traditionally patients didn’t fit into it, conferences were purely for scientists.

It is now becoming more and more common however, for patients and the public to attend and get involved with conferences as the importance of making healthcare centered around patients and understanding ‘real-life’ experiences becomes more apparent for making research relevant.

A conference is a great place to make scientists and researchers aware that young people are interested and want to get involved in research. This is why it is really important that Your Rheum will be at the BSPAR conference. It will be a fantastic opportunity to make researchers aware of our group, show them why it is important that young people need to have a voice in research and also to give them the opportunity to meet the people they conduct research for.

Look out for a blog-post after the conference with all the details of how it went.

Your Rheum is born!

Posted on by Your Rheum

Hi everyone,

So we had our first meeting last month in Manchester and had a great time kicking the group off with some introductions and discussions on how we want the group to run in the future.

One thing we discussed was giving ourselves a new name so that we can be recognised easily. We had a load of suggestions including some reality tv inspired ones with ‘strictly rheum’, Rheum Factor’ and, my personal favourite, ‘Britain’s got Rheum!’. However, the winning name, as voted by the group was….drum roll please….

Your Rheum

 

So now we have a new name we need a new logo! This is my (slightly uninspiring) 10 minute creation that we have currently on our Twitter page….

I’m sure we all agree that this can be improved! 🙂

This is a great chance to use your creative design skills to produce something that will be displayed nationally - if anyone is pursuing a creative career path, this would be a brilliant opportunity to add something to your portfolio of work.

If you would like to submit a design please email it to me by 30th November 2016, at : katharine.cresswell@manchester.ac.uk

 

 

 

What exactly is an Advisory Group?

Posted on by Your Rheum

Hi everyone,

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 katharine.cresswell@manchester.ac.uk

Hopefully see you in Manchester on the 15th for our first meeting!

 

 

 

 

 

Welcome to the first National Young Persons’ Advisory Group on rheumatology!

Posted on by Your Rheum

Hello and a very warm welcome from the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR) and the Public Programmes Team, who are working in association to develop the YOURR Young Persons’ Advisory Group (YPAG) specifically for rheumatology.

We are really excited about getting the group started and helping to provide young people with the opportunity to have a national voice inputting into current adolescent and young adult rheumatology research.

The website is currently under construction and so we welcome any feedback or comments you might have. Please do take a look around and get to know what the Group is all about and how you can get involved.