Meeting of Minds (MoM) is an independent, patient-owned and patient-run organisation that aims to enable patients to project-lead their own healthcare and treatment. The ‘Champions’, as they are all known, involved in the organisation strive to encourage service providers that such practices are highly beneficial, as well as empowering patients to guide how best to treat them, thereby creating sustainability and maintaining effectiveness. Naturally, MoM required a substantial amount of research to begin, which is where we came in. We thought we’d let Rob Hayles, a Champion at MoM, tell the story…
‘At Meeting of Minds, our tagline is ‘enabling patients to project lead their own care and treatment’. In order to best achieve this, we needed to do a lot of research, gathering information from not only the patients, but from other areas as well. The problem was that the trusts we approached to be a part of our project just completely stonewalled us, saying that they simply weren’t interested, unless we were working toward the National Institute for Health and Care Excellence (NICE). So, rather than have an argument, we agreed and decided that that would be exactly what we’d do – and that’s when we got DCC involved.
‘DCC is well known in the industry and widely accepted, so we knew that with their involvement there would be no concerns from any trust that we were not working towards NICE. But, the reason for our seeking the help of DCC went beyond just that. We needed help gathering our data for research, and we needed feedback from not just the people we were training, but from the patients too, who would be doing the training. To be honest, we didn’t know where to begin, but we went to DCC with an idea, and just like that, they were working with us to put together feedback forms, printing them, collecting information and creating a dashboard for us. They not only turned up to the first training session, but they continued to involve themselves throughout the project. They became an integral part of what we were doing; it strengthened us completely.
‘I met Ravi, from DCC, at a Patients Association ambassadors’ meeting, and we began working together from that day onwards. We formed a long-term friendship as well as a business relationship, and Ravi became the single person I trusted with our project. With Ravi and DCC, we gained validation, due to the strong collaboration, something we were in desperate need of. At MoM, we are all patients ourselves, and of course the people we incorporate in our research are patients too, so it was imperative that we were not putting anyone under too much pressure, and that the whole process was run smoothly and with care. Because DCC do care for every project they choose to get involved in, we were able to do so.
Rob Hayles, Champion for Meeting of Minds.