Hello, I am an engineer/scientist working on research project developing a radically new type of implant to treat small-joint arthritis; this project is called APRICOT. I believe this new implant will transform the lives of people with arthritis. However, it will only do this if it has the best possible team behind it.
But what does this ‘best possible team’ look like? In recent years, we have come to realise how increased diversity in teams and listening to a variety of voices improves the overall performance of the team. I see public involvement as a key mechanism to achieve this. Why? Most scientists/engineers/academics/clinicians developing treatments for arthritis don’t have it. As a result, they can’t fully empathise, they can’t ‘feel’ what it’s like to live with arthritis – they need people with arthritis in the team to help all those involved in the project fully understand the condition.
Seeing the work being proposed to try to make this surgery more simplistic has been an eye-opener. Having input about our feelings towards arthritis and what we do to carry on normal life has felt like we are at last being listened to as well. I hope that more input from the patients will be taken into account as well in the future.
If you’d have asked me before I started working on this project how to learn about arthritis I’d probably have said ‘read a book’. My assumption, therefore, was that everything I would need to understand what we know about arthritis would be written down. I have come to realise this is not true(!). This is particularly hard for the scientific side of me to take, as I very much believe in the scientific approach of seeing what all the relevant previous studies have found, and been shared in peer-reviewed publications, and working from that point. However, this approach preferences certain types of information, and particularly things that can be measured in some way, with things that are easier to measure sometimes getting a disproportionate amount of ‘airtime’.
However, the world is rich and complex, and people know a lot (a lot!), and it is very hard to translate all this into scientific measurement. Public involvement exposed me to how rich, diverse, and complex the interaction between arthritis and a person is. It allowed me to appreciate that the reduction of arthritis that is presented in the scientific literature does not fully articulate what it truly is. When taken on its own, without augmentation by conversations with people, it is possible to think that pain dominates the symptoms of arthritis, with some additional features of joint stiffness and range of motion. Yet it is so much more than this, it’s also about your relationship with your body: can you trust your joints, can you rely upon your body to perform when you’re looking after your grandchildren, can you still call yourself an independent person. There is so much more to arthritis and if we, as a team, are going to transform lives with new technology – we had better make sure we understand what it is we are trying to help with.
Perhaps there will come a time when scientists are able to measure and describe all that arthritis is and what it means so effectively, so accurately, that anyone who wants to know about it can really just ‘read a book’. However, until then, we’ll need to keep talking to people with arthritis if we want to truly understand what it is and what it means for people. This is why PPI is essential for our project, and why we are so grateful to our public contributors for what they have given to the team.