Today I'm here with with Anna and Jean to talk about a co-production project called Hearing Birdsong. Jean can I ask you to introduce yourself? I'm Jean. I have hearing loss. I don't normally define myself by my hearing loss, but in fact, it has led me to become involved in lots of health projects as a participant and as a spokesperson. Thanks for being with us today. Anna can I can I ask you to introduce yourself? I'm Anna. I'm the Patient and Public Involvement and Engagement Lead at the Institute for Global Health Innovation at Imperial College London. Great. Thanks for being with us today as well. So it's going to be really interesting to hear about the project you were both involved with Hearing Birdsong. To start with Anna, could you give us a brief summary just about the project and what it was about? Sure. Jean and I were part of a steering group, who organized a two-day event called a Sandpit Innovation Workshop. So this workshop is all about bringing lots of different experts together to explore a problem and come up with innovative solutions. So our workshop was all about hearing loss, we had people who had hearing loss, audiologists, researchers, designers in the room, and over the two days, they came up with innovative ideas and then one project was funded at the end of the two days. So Hearing Birdsong, as you mentioned before, was the project that was funded, and this is all about raising awareness in the public for people about hearing loss. It's an installation of bird boxes that emit bird songs at different frequencies, which are the frequencies that you might lose when you lose your hearing. So it's really an immersive installation to get people thinking about hearing loss and engaging with diverse communities about a complex topic. Fantastic. Thank you. Jean, can I ask you what interested you about being involved in this project? I was really excited because hearing loss is one of those disabilities and health problems that is not talked about enough, and here was a project that was going to work with my input even better to effect change. It was going to raise awareness of the public of the problem of hearing loss and look for a solution of some sort. Was the fact that it was going to be a co-production project, did that make a difference to whether you were involved or not? Well, that's quite funny. It was a term that I've seen around, but didn't really understand, but I was willing to go for it. What happened was, I went to workshops about co-production and eventually I became a spokesperson for it because it was so gripping to be involved, to involve other people in doing so, and to effect change that you couldn't have anticipated. Great. Can I ask you, so who did you involve in theis project, how did you know who the right people to involve were? The team actually started as a quite small team, Jean and I and another lady, and it expanded from there from our contacts and networks and thinking, who else do we need to involve? So as it's co-produced you've got to ensure you've got all the different experts around the table. So people with hearing loss, audiologists, we needed designers, researchers, engineers, a whole. Any others I forgotten Jean? What I found exciting was I brought in one person, and I was really impressed with the person I brought in. But then she brought in people that I dreamed of meeting in the hearing loss community. I see that as co-production it burgeons and you don't know who you're going to have. One more thing to mention about that is that, I think co-production, as you mentioned, is a word that lots of people use, but also lots of people don't necessarily understand it fully or believe in it necessarily. So for our team, it was quite important to have a few cool members who really believed and understood the process and that helped convince others about how important it was to work in this non-hierarchical way. So it was the traits that people had in their characteristics that made them natural co-producers. So traits I mean, things like facilitation and being able to listen to people and empathize and that helped to ensure that as a group, we worked well together and build good strong relationships. I know that you used the word experts earlier. Can I just clarify when you mean experts, that doesn't necessarily mean doctors, or professors, or researchers, does it? No. I meant experts in terms of everybody brings their own knowledge. So I work in patient and public involvement, in England, we call it public involvement. So I'm being expertise of how to involve members of the public, patients, and carers in research. Jean has lots of different skills, particularly in communication and writing and also has her experience of the healthcare system and her own condition which is quite rare and unique, compared to some of the other community members who had hearing loss, who had different conditions or different reasons and levels having hearing loss. So not only doctors and researchers, anyone who's bringing a unique set of knowledge and experiences from their life or work. That's one of the principles of co-production, isn't it? Can you tell us a bit more about co-production and how it differs from what we in the UK refer to as public and patient involvement. What's the difference? To me, co-production is all about working from start to finish of a project with a diverse group of people who bring different knowledge, and you're also learning from each other, and you're on the same level. Jean and I were team members who were equal, there wasn't any hierarchy or power, whereas public involvement, in my experience, it can be done at different time points in a research project rather than throughout the whole project, and there might be a power differential that if the researcher is the lead for the project who makes the final decisions, they might take advice from patients and carers, but they ultimately are responsible for the delivery of the project. They hold the funding and therefore the power. Sure. Jean, has this project differed from other projects you've been involved in in terms of the way it worked and who was involved in the process? For me, absolutely because usually I have a specific role. I'm called in, it might be a steering group to do with research and they ask my opinion along the way and I don't really know how it got set up. I don't know about the funding. I don't know really about the goals or how what I contribute will be used. But here I was making decisions along the way. They were not necessarily to be taken up. Everything was discussed. I loved that discussion. Great. So in terms of the benefits of co-production. From your perspective, can you think of what would you say they are? The benefits in general or for me? For you. What did you think? Let's just start with ego. It is really wonderful to be asked to think. We all think the whole time, but we're not necessarily asked to think. As we think, we learn. We learn about the world of healthcare, we learn about goals and long-term and short-term goals in healthcare. We feel that we participate. What about on the project itself and how impactful it was. Well, for me, I was a bit cynical at the beginning because Anna said we're going to have an event, and the event is going to take two days, and after that, we're going to have a winner. I thought, how can we have a winner? Where will we get the projects from? Where will we get the people? The people showed up, they thought by being together, they came up with ideas. Every project that competed could have gone forward. Would you be interested in doing more projects in this co-production way? I'd love to do it. Yeah. Great. Anna have you got anything to add about benefits in terms of co-production as a process? Yeah, I think personally, the project felt very immersive and there was points, Jean and I was speaking on the phone almost every day. We had a WhatsApp group between the steering group who were organizing the sandpit innovation workshop. So it felt that you've really made strong bonds with people and got a real momentum going. So since then, we've applied for other funding, we've talked at events, we've really connected the hearing loss community. So I think if the project hadn't been co-produced, I don't think there would've been a strong bonds and I don't think there would have been so much momentum. I think I've learned a lot about hearing loss itself, because I organized lots of events, I always think about wheelchair access, but I hadn't ever thought about hearing the access when someone has hearing loss. Now when I'm thinking about organizing any type of event, I think, is there carpet are there low ceilings? Is there light for people to lip read? So I think I've actually learned about changing how I work every day and also how I communicate. Am I a good communicator? Am I looking at people and speaking clearly? So I think it's really improved my knowledge about people, issues that people live with who have hearing loss. I think anyone who's thinking about doing co-production should definitely give it a go. It can be quite a scary word, and you might not know exactly how to do it well, but there's lots of good resources out there about the principles of co-production. But really we found it was about doing it, made us understand the process and you do come across challenges and you work as a team to overcome those challenges. You learn by doing and I think that's the most important thing. If there's someone you want to convince about co-production, you should get them to experience it. So Jean could you tell us what advice you would give to someone who is a patient or a service user, who was thinking about getting involved in a co-production project? Well, I'm always telling patients to get involved in every project because we're all patients, but when we take on for ourselves the identity of a patient, that's when we can start to try to fight hierarchy, because you feel disempowered in most situations as a patient. Co-production is maybe the maximum way of doing away with that hierarchy and having a say. But the other thing is, all the people that I worked with, well, all the professionals, were part of, were working, where they were working full-time and they were getting paid. So if you come in as a patient and you're giving of your time, that can be feel exploitative. But in this co-production, I was paid and all the people who were non-professionals were paid and that makes you feel validated. That's really important. Thank you both so much for being with me today to talk about Hearing Birdsong. It's been very inspirational. Hopefully you'll be able to use co-production in a project you use in the future as well.
