Since getting involved in asthma advocacy and involvement in research I have also been part of the Astra Zeneca Patient Partnership Program (PPP) for Asthma. I do a huge variety of things as part of this program to help Astra Zeneca with their work to improve the lives of people with asthma. This can range from being part of teleconferences discussing potential projects, reviewing information booklets, education materials, or global virtual meetings.
As part of the PPP I have had the opportunity to meet so many other people affected by asthma, some with severe asthma, some with mild asthma and also those who care for people with asthma.
One of the roles that I find most rewarding is when I am asked to speak about my experiences and be part of a panel. There is a lot of focus just now on severe asthma so when I am asked to speak to people within the company about what it is really like to live day to day with severe asthma I jump at the chance. Severe asthma is so misunderstood and has so many other components and not just the asthma part but the side effects from medication, impact on work or education.
(the first event I attended with Astra Zeneca just over 3 years ago)
I have not long got back from Madrid where I was part of a patient panel speaking about our input into a project and why it is so important particularly how would it have been helpful when we were newly diagnosed. To be able to speak to a room full of people who are all transfixed on you and what you are saying is a very surreal experience but it makes me see how important my story is and why I need to speak up about life with severe asthma. When working in a large company you often don’t get the chance to meet patients particularly when medication is in development and not ready to be trialled on humans the scientists don’t get to see the impact the end product has so attending these events is key. It shows everyone just how important their work is and what the impact of the end product can be.
We also had some videos recorded about our involvement in the PPP and why the work Astra Zeneca is doing is so important.
I have had so much fun working with Astra Zeneca. I used to think pharma was just about making money and they didnt have patients at its heart but now my view has totally changed since I have been part of the PPP. All the work they are doing they are looking at how they can include patients to ensure the work is going to make a difference to people with or affected by asthma.
I have also got to make some great friends and would really encourage anyone else who wants to find out more please get in touch. What I have found is that I am getting to see a whole new side to asthma and developments in asthma medication and management which I did not see before and do not see when I am involved in the applied side of research.
Please drop me a message if you want to find out more about the patient partnership program and how to get involved. I have had such a great time that I would encourage others to join too!
(Please note AZ has not told me what to say and all my opinions are my own)