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E.O.E Newsletter | www.huanet.gr
But the psychosocial needs of the patient are often forgotten in that personalized medicine journey. We are now talking about living guidelines. Living guidelines mean that we are going to be aware of the patients’ perspective. Awareness is the key and we are only scratching the surface!
T.S.: In your opinion, what is the ideal role of the Patient Office? Is today’s Patient Office the one you imagined when you first became its Chairman?
E.R.: Well, as I said, it’s not the one I imagined, because I have met some brilliant patients and great colleagues who have influenced me and shaped it into a different way. What is the ideal role of the Patient Office? Well, the EAU has a huge membership. We should raise awareness among our members of the importance of engaging with patients and listening to them and I’m not saying that this is not happening, but we now have a formal platform, an information website, and a developed system where we can learn more from our patients. We have to capture the patients’ voice in the form of proper data and evidence. That voice will serve us in many ways in our research (any research must incorporate the patient perspective), in our interaction with the patients, in the education of undergraduates and postgraduates, etc.
The other issue is that we are in a massive technology age and we are talking about artificial intelligence which I’m going come to later. We all know that the patients are now using the internet, but we need to make sure that we steer patients towards trustworthy information. Trust is going to be key. The Patient Information website represents a useful source of information, which is valuable to urologists, because it reflects best practice. It’s trustworthy, because it is based on the guidelines, and moreover, it is in a language that the patients understand. We need to improve, that’s another challenge. For example, we need more animations (a picture tells a thousand words), because if we want to be realistic, no one is going to read five webpages in text. We also need young people, their communication skills, social media etc.
The main theme behind the Patient Office is that we are in a constantly changing healthcare system (technology, personalized medicine, huge biological advances especially in cancer care),and in a time of artificial intelligence and huge technology advancements, we need to provide a secure and safe
platform, where urologists can direct their patients to trusted advice (site), which is based on best evidence and which will enhance their personalized journey!
F.N.: How can the healthcare providers empower their patients to participate in their own care?
E.R.: This is one of the big missing elements. There has been very little done by healthcare providers to empower patients. This is not universal. For example, there are some very good initiatives I am aware of in the national healthcare service in the UK. They are really getting to grips with this. There have also been very good efforts in Scandinavia, in France and in Italy that I am aware of. But they never reached the level of government and implementation. This is one of the critical roles of the Patient Office and of the EAU with the national societies. Now we have the EAU Policy Office, that is designed to influence healthcare providers. Certainly, the Patient Office and the Policy Office are close and work together, but as a stand-alone organization, how can we influence, for example, the Greek healthcare providers to empower their patients, if we don’t work together with the Hellenic Urological Association? This is very important, but also very much absent. It is very easy to say to the urologists, yet again: “Partner with your patients, apply share decision-making, get patient reported outcomes”. Urologists are already absolutely overwhelmed with work. Healthcare providers should be the ones who will fill the gaps and will work with them to provide an ideal service to the patients. This is missing at the moment. So, the question is an excellent one. It is not happening. It needs to happen. Because at the end of the day, the patients will demand it. This is where the Patient Office needs to work with the national societies.
T.S.: What do you believe about the Greek Patient Office? What would be your advice for the optimization of its role?
E.R.: I had the great pleasure to meet the officers of the Greek Patient Office. Markos Karavitakis is one of my colleagues in the Patient Office Board; he is a very valuable member of the Patient Office. I am applauding you for setting it up. Only Greek urologists can reflect and inform about the needs of Greek patients properly. There are unique cultural aspects in Greece, that we can never know about in the Patient Office. For example, look what you have done with
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