AUKCAR PPI update

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I still pinch myself as I can’t believe I am involved in such a fantastic research centre. AUKCAR is a unique virtual centre incorporating 13 institutes which all have teams of dedicated researchers wanting to make the lives of people with asthma better by addressing three key areas: encourage good asthma control, maximise treatment benefits, and reduce asthma exacerbations and asthma deaths. Something which is desperately needed as every day there will be someone somewhere in the UK dealing with the consequences of a loved one dying from an asthma attack.

Since the start of my involvement in AUKCAR I have done things and been involved in things I would never have even dreamt about. By the end of this year (or perhaps January depending on whether it is Dec or Jan issue) I will have had an article published in the British Medical Journal, I will have been to 2 annual scientific meetings for AUKCAR, I have commented on a variety of different things, attended focus groups, sat on patient advisory panels, been part of the PhD reviewing team, spoken to PhD students via a webinar to give them the full story of what living with asthma is really like, but for me there are two things I am particularly proud of, firstly being invited to join the Centre Management Committee (CMC) for AUKCAR and secondly is to be part of setting up the Children and Young Persons group.

Back when I was first asked about joining AUKCAR’s PPI Group I was ecstatic about the opportunity to be involved in such a group breaking centre. I fell into it and had absolute no idea where it would take me- all I knew at the start was that I could do as much or as little as I wanted. It turned out I love doing all of the different tasks we get asked to do so find over the last year and a half I have done quite a few things!! As emails came through I would read things and comment and find the different projects so fascinating that it was really no chore to spend some time putting comments together for the researchers.

From the outset of joining AUKCAR I knew I would be involved in helping with the children and young peoples (CYP) side of things and trying to build PPI for the CYP group. When it started out I really didnt know what I was doing but in time we (myself, a research fellow from AUKCAR and an asthma nurse specialist at the RHSC in Edinburgh) got a group of children and young people and have had several meetings where they have all been so enthusiastic and we have done a few bits of PPI but our first big PPI task will be in the next meeting where a researcher is coming to speak to them and get their feedback. The enjoyment you see them having is great and they have so much enthusiasm that often we don’t get through what was planned as they have so many ideas and there is much discussion. We were worried at the start about how to get children involved and if they would get bored but it has been quite the opposite. It is really exciting. Even more so now that there is a group name and logo designed which will be launched soon!!!

Earlier this week I went to my first CMC meeting for AUKCAR. I never dreamt I would ever be part of this, it never really registered with me what the CMC was when I was at my first scientific meeting in Oxford last year. But now having been invited to be part of it I think it is a big deal. To me it is a big deal. It means being part of the team that manage the centre. I was sitting in a room with what can only be described as some the best asthma researchers in the world. I really didnt know what to expect. I have met all of them several times before and all of them are lovely but when asked my opinions on something I was kind of shocked as to me these are the guys who do all this research and understand all these statistics etc that fly around yet they were asking for my views, initially I was thinking I only have asthma what do they want to know from me, but as the meeting went on it was so clear to see how much the centre value the input from the “people who just have asthma” and see it as far more than that. Their research is shaped around what the needs of people with asthma are which is what makes the centre so unique. Patient and Public Involvement (PPI) is embedded in all the research they do from PhD researchers, early career researchers to the researchers at the top of their field. No research is exempt from PPI. The meeting was a really good experience even if the statistics and data parts went totally over my head. I am really excited and looking forward to the next few months with the annual scientific meeting, going to the FARR Frontiers meeting thing and another CYP Group so lots going on.

Educating the next generation of researchers!

Last week has been really busy but really busy in a good way!!!

I had a day which was a bit of an AUKCAR day- starting with a PPI teleconference, moving to discussions about the Children and Young Person’s Group before finishing with a Webinar for the PhD students. A busy day but lots accomplished!

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The Children and Young Persons group is really taking shape and we have a number of enthusiastic young people contributing. Our one hurdle just now is trying to work out a name which can be catchy but still gets the point of the group across. My imagination is very limited so coming up with a name or acronym is defeating me. I am sure something will come up between those of us involved in the group (I hope!!). Back a year ago when I was first asked to be involved in the CYP I never imagined it would be as it is. I am not sure what I was expecting but having had no experience in helping to run a group like this I really didnt know what I would be in for- all I knew was I wanted to involve young people in research for asthma after my teenage years have been effected so much by it. In time we hope to have the group spread to different areas of the UK so all asthma researchers can have access to young people for input into their research.

For me one of the highlights of the day was taking part in the webinar for the PhD students- the next generation of asthma researchers. A slightly odd experience having never taken part in a webinar or any sort of video conferencing- but after a while it was not too bad and I got used to the changing screens and seeing yourself on a screen too!!

When I first joined AUKCAR I made an assumption that everyone involved in the centre and its research would know all about asthma, inhalers and the different medications. I guess I was shocked when I sat down to dinner with one of the students to discover they didnt have much of a knowledge about asthma. As the conversation moved on I found out that just because students were doing a PhD involving asthma did not mean they were a medic or from a medical background. There are nurses, engineers and a variety of other backgrounds which would never expose many of them to asthma and the physiology behind it. There is something overwhelming in a way that people who are not always connected to asthma want to make a difference to the lives of those with asthma. I don’t know how to describe the feeling- part of me questions it thinking “why asthma..its only asthma after all” and it is far from one of the diseases which is “sexy” in the research world where there is a huge amount more funding. It is just asthma- but just asthma effects so many people in so many different ways that it does need more recognition and investigation into why it can be such a life threatening disease.

After discovering the variety of backgrounds and having chats with the students I decided to suggest the possibility of doing some asthma education and speaking to the PhD students about living with asthma and how it can effect daily life. Im not sure if i expected anything to come of the suggestion but it was great to find out that a webinar was planned between 3 different universities to learn about asthma and also hear our experiences of living with it. For the first time it was done I was pleased with how it went. Having 2 PPI members there swell as one of the researchers gave the students different perspectives of asthma and how it is not the same in everyone. Myself has the slightly more uncontrolled asthma whereas the other member has relatively mild asthma so his experience is very different from my own.

I hope the students got a lot out of it. I tend to look back rather critically at how I have done when speaking and did feel I could have improved and made it a bit clearer should I need to do it again but we did have good discussion and the students all had questions.

Sitting in at the end hearing the students update each other on how their respective PhD’s are going was good. Some are much more engaged in PPI than others and it was good to see where there is a gap for PPI in the some of their projects but more so I was able to see the potential for where our CYP group could give input to help the students.

There has been lots going on but all good and keeps me busy!!