These days, I feel like my opinion matters a lot! Recently, while checking out from a hotel, I was asked if there was anything that could be done to make my next stay better. Even the grocery store is asking me what I think of their service!
So, why am I never asked for my opinion on my healthcare? Besides making patients feel like they have a voice, the effective recording of patient feedback could only be beneficial. Like in a customer satisfaction survey, the things that are not working could be addressed and practical suggestions could be implemented. One of the reasons why this doesn’t happen is the complexity of the subject matter.
If I get overwhelmed when I read the leaflet for my hay fever medication, the confusion skyrockets when I try to comprehend treatments for my Multiple Sclerosis (MS). I only see my neurologist for ten minutes every nine months so I must be proactive to gather reliable, understandable information to help me make sound choices. Even then, it’s easy to get “bamboozled by Google”.
Although that is how I stumbled across EUPATI! I was so impressed by its potential that I felt the need to share its objectives with you. EUPATI stands for the European Patients’ Academy and it is a patient-centred organisation. Their goal is to help patients become more educated and involved in their healthcare. You can find out more at www.eupati.eu in any of 7 languages!
EUPATI are training 100 patient experts from over 30 different countries to help the medical world and patients communicate better. I am one of this year’s students learning to translate medical-speak to meaningful, accessible and reliable information. This will help me understand why it takes so long for drugs to come onto the market and why they are so expensive. To understand what I can do to help!
This knowledge needs to be made accessible to everyone. Cue the Patient Advocate Toolbox! The Toolbox will be an online source of information on topics related to Medicines R&D. Laura Kavanagh, the Coordinator for EUPATI National Platforms says that the Toolbox will be a huge turning point for patients across Europe interested in advocacy. It was launched on January 27th (like I said, in seven languages!). The figures are always growing but they have easily reached one milestone – 14,000 individual visitors in the first six months!
In Europe, we spend an average of 9.5% of our GDP on healthcare. There is no doubt that the benefits and risks of treatments are difficult for patients to understand. However, in a time of growing demand on both quality and sustainability, it is important for patients to take action and understand our own healthcare better, yes, to own it!
Unfortunately for me, I can’t take a break from my MS. I can’t switch off the pain and misery it brings on a daily basis. There is currently no cure but I have so much skin in the game that I have to do all I can to help find one. EUPATI are giving me an opportunity to empower myself and take a more active role in this quest. Patients’ opinions DO matter and together we are stronger. Please take a moment to find out more. There Is Nothing About Us Without Us!