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the “Check your Balls” campaign with the young Greek men. This is just pioneering, visionary stuff. With your permission, we are going to learn from you in the Patient Office. I would really encourage national societies to set up a Patient Office, like you did. I don’t expect every Patient Office to have the funding or the structure of a big organization like the EAU. We develop, for example, webpages and animations, that costs money. Translations cost money. This is where we work together and we collaborate. We share our learnings. I am a very passionate believer of that. For example, there is a potential research topic coming out now about artificial intelligence, ChatGPT; how valuable are the data, what do patients think about the medical data that they learn from ChatGPT? That is meaningless if you don’t include the Greek patient’s perspective, as much as the Irish patient’s perspective. Because patients are different. This is an example of collaboration, but there are so many other things we could do. So, I applaud you.
T.S.: In your opinion, is there something that members of the Patient Office Steering Committee should be really mindful of?
E.R.: The very core of every national or European Patient Office is to demonstrate that you are listening to your patients. That’s the core issue. And it is not just listening, it’s doing something about their concerns. That’s a very simple kind of philosophy for any patient engagement. When you are directing the patients to patient information websites, make sure that they are trustworthy. You have to be careful with that, because if they are not trustworthy websites, there is going to be a bad outcome and this is undesirable. My other advice would be to take your time. As I said before, in the EAU Patient Office we are on a journey. We are
learning, we are evolving and we didn’t get everything right. Take your time, start slowly, work on your young urologists. I am not speaking against the colleagues of my age, but I believe that the young urologists are going to have to deal with this. So, you have to target the young urologists. Changes in medical practice often take a generation. Younger patients have a different view of healthcare issues than older patients. Also, while I talk a lot about empowering patients, just bear in mind a very small thing: some patients just want to leave all of their care in the hands of the urologists. We must not forget that either. If the patient wants that, that is good as well. It reflects the patient needs. So, listen, act, go slowly, have trustworthy evidence and you will go a long way. Then, this will evolve in the generations to come.
F.N.: Should every country establish a Patient Office? How can the EAU support the countries of the EU regarding the development of a Patient Office?
E.R.: Certainly, in Europe and in an ideal world, I would hope that every country would have a Patient Office. I would hope, also, that our template and our methodology would help them in this direction. Certain challenges, like translations, animations, which are expensive, are some issues when establishing a Patient Office. But again, in order to reflect the diversity and the multiculturality in Europe, ideally every national society should have a Patient Office. That doesn’t mean that they need to do everything that we have done. There are certain things in the EAU, like the website, that can help national societies, rather than spending huge resources doing the same. I don’t expect every country to do everything that we do. I think that if the national societies begin to see the need for a Patient Office, then we begin to win the argument that listening to patients and patient empowerment are arriving in healthcare.
T.S.: How should urological patients face new technologies, treatments and techniques? How can the Patient Office help in that direction?
E.R.: I am quoting a colleague from America, who showed me a slide recently. Apparently, there have been more data put out in the internet in the last two years, as there have been in the previous hundred years. Not only healthcare information, I am talking about all data. We are in the middle of an absolute “tsunami” of data and it is absolutely impossible for
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