Back in 2012, EAU Patient Information (EAU PI) was established to better involve patients and their families in the EAU’s mission of raising the level of urological care in Europe. As well-informed patients are better equipped to talk about their conditions and treatments, this would foster a more meaningful dialogue between the doctor and the patient, which would lead to better care.
With its focus on product development, such as translations of the EAU Guidelines into lay language, EAU PI grew significantly over the years that followed. In 2019, this resulted in the creation of the EAU Patient Advocacy Group (EPAG). “EPAG was established to involve patients and their advocates in every aspect of our product development,” Prof. Eamonn Rogers (IE), chair of EAU PI, explains, “but also, perhaps more importantly, to give them a platform from which they could voice their perspectives and needs. In EPAG, they can collaborate with the EAU to bring matters to the attention of Members of the European Parliament in Brussels.”
As a result, EAU PI had grown into an impactful part of the EAU, a part that required a seat at the EAU Board table. During the virtual General Assembly on the last day of EAU21, the EAU members approved of the EAU Patient Office being added to the board, with Prof. Rogers as its first chair.
“I accepted this role because I want to build on PI’s growth and develop further alliances with patient advocacy stakeholders,” Prof. Rogers says. “I believe two of the pillars we must build on are dedicated patient education and the additional needs identified by patients on Patient Day during EAU21. These needs included more information on the financial burden of urological cancers, ensuring that the needs of loved ones are addressed in care plans as well, digital literacy, and finding support in patient peer support groups.”
“I want to particularly emphasise the importance of translating our patient materials into our patients’ native languages as we cannot talk to patients about their needs unless we speak their language. I hope my new role as chairman of the EAU Patient Office will allow me to work with national urological societies, who are best placed to know the needs of their citizens.”
“There will be considerable challenges. While evidence shows patient outcomes are enhanced by patient involvement, urologists are constantly pressured to see more patients and reduce waiting times. Urologists cannot be expected to address the additional needs of patients by themselves. With the impending regulatory bureaucracy, it is imperative that my office, in cooperation with EAU colleagues, challenges healthcare providers to develop facilities to support patients psychosocially and financially.”
Prof. Rogers, who started as EAU PI chairman in 2020 with decades of experience as urologist in his home country Ireland, believes he has acquired the know-how to handle these challenges. “In 2016, Ireland’s Health Services appointed me as National Adviser in Urology,” he expounds. “Working with the Royal College of Surgeons, we published a blueprint for urological services in Ireland. ‘A Model of Care for Urology’ incorporated a policy of improved patient access and treatment with an integrated value-based healthcare management strategy to adopt it. A key component was to modify the urological healthcare to optimise the interaction between the hospitals and the community. We worked with multidisciplinary stakeholders and patients to achieve this. Furthermore, we developed patient-centred strategies on the most prevalent chronic urological conditions Irish urologists had to treat.”
“This unique experience of working simultaneously with patients and healthcare professionals gave me the opportunity to influence and lobby politicians to raise patient issues and seek critical resources. I was left in no doubt of the influence of patient participation in improving urological healthcare services while patient participation enhanced me professionally.”
“Prior to this experience, I had also worked on the Irish national accreditation of patient support groups.”
Partner with patients
With his term as chair of the EAU Patient Office just underway, Prof. Rogers directs his words at his fellow urologists and EAU members. “EAU members have a proud tradition of caring for patients. However, there is an increasing demand from patients for greater control over the decisions that affect their urological health, especially post-COVID. This is driven by demographic changes where patients increasingly seek healthcare advice using internet-based health technology.”
“I believe it is critically important for urologists to partner with patients as we manage, and patients increasingly live with, highly prevalent and often co-morbid chronic health conditions such as prostate cancer, urinary incontinence, sexual dysfunction, male LUTS, and urinary tract infections. Also, we must advocate for patients with a urological disease so that they receive better support from healthcare providers. In this regard, patients and their advocates are crucial allies as the EAU lobbies for improved urological healthcare.”
“Simultaneously, I hope to educate patients on the importance of participation in clinical research and self-managing general and urological wellness.”
“As I chair this new office, I realise I will be standing on the shoulders of visionary giants. I want to thank the EAU for the honour of appointing me to this new role.”