Today I had the opportunity to meet and chat with one of the people who have been promoting patient involvement in research and the new research centre which has received funding from Asthma UK. It was a fantastic opportunity to speak to her and find out what she does, how closely she works with Asthma UK, and why she is involved in asthma research. She is effectively the patient liaison and wants me to join her and a potential new research fellow into the development of a group which targets young people to be involved in research in asthma.
Patients them selves will not be doing the research but the group will enable young people to have a voice to express where they feel research is lacking from their point of view. My particular interest is not finding a cure for asthma- although that would be fantastic but research into making life easier to control asthma, have better management etc so asthma does not become a huge part of peoples life like it has mine.
No one should need to have their life ruled by asthma as mine has been recently- and being able to influence where research is focused is something that would benefit the many people out there that are like me.
The thought of taking part in research often does not inspire anyone. It has no benefit in the short term to most people unless it is a medication trial and the medication has a positive effect on them however influencing where research is directed is something that can benefit young people.
The purpose of the group would be to make sure that the wording of documents interests young people but does not come across as patronising. We want to know what can be done to make life better.
My actual role in all this is uncertain. I need to meet with everyone again and really discuss what is happening and the plan and route it will take. But this is a very exciting opportunity and I am looking forward to it.