AUKCAR, PPI and Me

AUKCAR is the Asthma UK Centre for Applied Research. It is a virtual centre of 13 different research institutes who will work together to try and:

Help people take control of their asthma so they can live full and active lives
Help people get the most benefit from their treatment
Reduce asthma attacks, keeping people out of hospital and reducing asthma deaths.

I am so proud and honoured to be part of the centre. I fell into the centre after doing a couple of interviews for World Asthma Day back in May 2014 when the National Review of Asthma Deaths was published. Here is an interview I did about how I got involved in the centre.

I am amazed at the dedication so many people have to try and better the lives of people with asthma. It is a surreal experience to be able to meet and speak to researchers who could potentially make my life better. In the past I have seen research as something that happens but never did I think I would be involved in it, influencing it or even benefiting from the outcomes.

One of the key differences about AUKCAR is that it has patients at the fore front. They want to involve people with asthma or those effected by asthma throughout the whole research process to ensure that research is relevant to people with asthma, carried out with the patient’s best interests at heart and that research results are communicated to the public effectively.

This is where PPI comes in. PPI or Patient and Public Involvement is how I fit into the centre. Along with 3 others who were involved in the creation of the centre, we help researchers by reviewing lay summaries, or be part of patient advisory groups, read patient information leaflets. There is a huge range of different areas to be involved in. PPI is so important in research because it keeps the research real and relevant. Below is the video from the PPI session which took place during the First Annual Scientific Meeting of AUKCAR. I do a little bit of speaking at the end of the video!!

When I first had a chat with one of the leads of PPI for the centre, a Children and Young Persons group was mention. I instantly knew this is where I wanted to focus my energy. It is all very new but our Children and Young Persons group will soon be launching and having our first meeting.

I can’t believe I have been part of PPI and AUKCAR for 9 almost 10 months. It has gone by so quickly. Over this time I have kept track of all the different things I have done. It looks like a lot but when doing it all it doesn’t feel like work. I am passionate about making the lives of people with asthma better and more manageable. Having a role where I can contribute to this is amazing. I can’t imagine what I would be doing if I was not involved in the centre.

Do you think you might want to get involved in asthma research??

Watch this video:

and then visit this web page: http://www.aukcar.ac.uk/public/

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