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components to the Patient Office; the EAU patient Advocacy Group (EPAG), the Patient Office Working Group, and the Patient Office Board and like any Office you have to have rules and regulations.
The beating heart of the Patient Office is the patients’ perspective, coming from the EPAG member organisations. They are the ones who bring the patients’ voice to the Patient Office table and they work alongside with the Patient Office Working Group, who are colleagues from National Societies around Europe.
The purpose of the Working Group is to ensure that the Patient Information website, which both patients and urologists use, is absolutely trustworthy and based on the EAU Guidelines. We do not publish anything that we feel does not comply with the EAU Guidelines.
The Patient Office Board consists of the Chair persons of the School of Urology, the Guidelines Office, the Policy Office, the Sections Office and also has two patients as members. That’s where the ideas, which are generated by the EPAG and the Working Group, are integrated into the EAU system.
So, that’s the basic structure of the Patient Office now. And, as I said, it is evolving. We started off with a small group and now we have patient advocates who represent all five urological cancers (kidney, bladder, prostate, testicles and penis). We have patient advocates, who represent non-oncological conditions such as the World Federation of Incontinence and Pelvic Problems (WFIPP) and the International Painful Bladder Foundation (IPBF). There are patients now who bring that perspective, and remember,, chronic disability is one of the biggest causes of urological disease (prostate cancer survivorship, incontinence, sexual disfunction, urinary tract infections, BPH). This perspective is not only disease specific; there is expertise from patient advocates on issues such as survivorship and disability. A group is successful if it is diverse. The more diversity we have, the better, because Europe is a multicultural Society.
We now have this opportunity to speak to the Hellenic Urological Association who themselves have established a fantastic Patient Office. We need to work together. How can an Office which is based in one part of Europe reflect the multiculturalism and diversity of Europe and beyond? And even within one country there are different cultures. So, we need the National Societies, as well. We are not static; we are learning, we have made mistakes but we are on a journey!
F.N.: What are the difficulties that a Patient Office can face, when it comes to the inclusion of patients in their own care?
E.R.: I am a patient as well; I have had major surgery, so I can perhaps speak a little bit from the perspective of a patient. I think the main issue is to raise awareness of how important it is for urologists to engage with patients, to listen to them and to try to incorporate their view. Patients don’t want to just know whether their treatment will cure them; they equally want to know the impact of that treatment on their mental health, on their family, on their loved ones, on their finances and on their ability to keep their job. I fully recognize that no urologist can answer that, it is beyond the scope of Urology. That is what healthcare systems really need to be challenged by. At the very least, we should raise awareness among urologists that there are issues, other than the 5-year survival from prostate cancer after radical prostatectomy, which are also important. Urologists need to be aware of this for a number of reasons. One, patients are now demanding it. Our younger cohorts of patients (millennials, gen Z, gen X) don’t always accept that the doctors know best. They want healthcare systems to provide them with more that just treatment such as a radical prostatectomy, but access to services that help them mentally and socially adjust to the treatment and its consequences. This is clearly beyond the reach of everyday working urologists, who are already overwhelmed with work. But they should just be aware of it and I would suggest to colleagues to just read our website and direct patients to it. We feel doing that is associated with happier patients and better outcomes. I am at the end of my career; I am an older urologist. Younger urologists are going to have to engage with more empowered patients, empowered by the Internet, which is not always trustworthy. So, it’s important that they can now refer to our Patient Information website which is based on the EAU evidence-based guidelines.. We all recognize that patient reported outcomes are going to become the most valid core data. Patients are going to demand shared decision- making which can only be established if you have the right data. We are on a journey now towards personalized medicine and personalized healthcare. For instance, we all know about the influence of our genetics and targeted individual treatments, which means that certain treatments serve some individuals better than other individuals with the same disease.
Tεύχος 26 | Nοέμβριος - Δεκέμβριος 2023
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