Two years as a Volunteer Patient and Public Involvement (PPI) Patient Lead | Bill Day

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I’ve been involved with the Asthma UK Centre for Applied Research (AUKCAR) for 6 years this April, including the last 2 years as a member of the Centre Management Committee (CMC). I was first approached to join the Centre as a Patient and Public Involvement (PPI) member at an outpatient appointment in central London back in April 2016 and will always be grateful for the opportunities that have been given to me since. 

A steep learning curve

I do not come from an educated background and it has been a steep learning curve at times, talking to professionals and listening to other people’s stories has drawn me to the conclusion that my lack of formal education is a result of missing so much school due to asthma, something that was highlighted to me with this experience. 

So, sitting in a room in Whitechapel with doctors, professors and PhD students for the first time was quite daunting, especially when asked for my opinion. There was no need for concern though as everyone has always been welcoming, keen to explain technical things and answer my questions, which is after all the whole point of PPI. I was mentored unofficially early on by Olivia Fulton, an experienced former PPI Patient Lead with the Centre. This has led to a mentoring scheme being raised as a possible policy at the CMC. This is great progress as some new volunteers without academic backgrounds have a lot to offer, and this scheme will grant them the confidence and support to do so.

It was taught to me by my favourite consultant as a child, that I am the world's foremost expert on my own asthma. It is great to have the opportunity to share my experiences in some small way in order to influence some research that will in turn make an impact on somebody else’s life. 

Becoming a Patient Lead and joining the Centre Management Committee

I was asked to join the Centre Management Committee back in January 2020 which has been another challenge for me in understanding how any research body works, is funded and plans for the future. Covid has seriously affected my ability to contribute as much as I would like to at these meetings, as speaking personally, I am not a fan of Zoom meetings, especially where I maybe feel a little out of my depth at times, a face-to-face meeting is always a better way to engage in more meaningful interactions. Hopefully, we’ll get back to that soon. 

Needless to say, it has still been interesting and worthwhile for me to feel I have been able to influence policy a little. I have also joined the Advocacy group as my mantra through most of my time volunteering has been all about making an impact – why does everything take so long to be put into practical use? I’ve had it explained to me several times about regulations but Covid has shown that things can move fast when they have to, so I’ll keep banging that drum! The PPI platform is well represented at the CMC and in the Advocacy group and I feel pleased to have had a positive effect on future proceedings. 

Activities I have been involved in

I have been fortunate to be involved in many interesting activities including:

• The 2018 Bristol Annual Scientific Meeting. This was my first experience of being in a room full of researchers and academics, slightly daunting but also inspiring. My clearest memory from then was a speech made by an existing PPI Lead (Leo Campbell) calling for greater and faster impact which echoes my own thoughts over the years since. It also showed me that even as a very new volunteer my input would be valued.
• The Chill Study – where I am on the Independent Scientific Committee and remember nervously asking a question at my first ever committee meeting and being hugely bolstered by the chairman echoing my thoughts and asking for a full explanation that then led to the meeting overrunning.
• I’m co-applicant on the AD-HOC project and feel that I made a real contribution to the early stages of designing the study – co-production at its best I suppose! 
• I attended the workshops for the UK Standards for Public Involvement PPI standards workshops with Melissa Goodburn and Tracy Jackson. I quickly came to the conclusion that AUKCAR already met most of the standards but it was still really interesting talking to other researchers about how to implement PPI in other areas of research.
• The Advocacy Group is a group where the brilliant Mon Fletcher, as Centre Advocacy Lead, is doing great work getting things done and achieving some impact with input from PPI members amongst others. This is great because I think most PPI members do get frustrated with how long everything can take to have any impact, maybe without properly understanding all the regulatory hold-ups but it’s great to have a group focussing on what can be done, rather than what can’t! 
• The most recent venture that I was asked to be involved in was a talk about asthma and exercise to be aired on the BBC’s Health Check podcast – I’ve become a bit of a fitness bore since getting my own asthma under control and it was great to have someone actually want to talk to me about it – let alone put it on the radio! Listen to me, and Centre members PhD student Leanne Tyson and Professor Andrew Wilson on BBC Sounds (between 06:38 – 14:21)
• There are also regular monthly meetings reviewing new research or PhD presentations which are always interesting and worthwhile as PPI comments are actively sought before presentations are made to a wider professional audience. 

Fancy getting involved?

I’d heartily recommend getting involved in PPI. I’ve thoroughly enjoyed the experiences that I have had and the interesting people I’ve met. In hindsight, I’ve come to realize that not having an academic background is a distinct advantage in many ways as researchers really do need a PPI member opinion on their research to validate it.

The Centre has been a wholly welcoming place for me to not only contribute to research, but to have new experiences within the academic world, and to learn about and develop my own abilities. It has been a fantastic opportunity for me personally and I can confidently say I feel my contributions have been valued. Volunteering and having your say could be instrumental in future asthma treatments and policies. 

Find out more about getting involved as a Patient and Public Involvement member through our Patient Advisory Group

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