Finding credible sources of information is difficult for patients and healthcare professionals. Intermediary organisations such as the European Association of Urologists (EAU) along with other international urology associations and industry project partners around Europe have made significant inroads into expanding the amount of reliable patient information for everyday clinical use. This digital review focuses on reviewing the patient information part of the EAU website for everyday patient use.
The website can be found at http://patients.uroweb.org and was promoted at the EAU 2018 in Copenhagen.
Ease of use
The front page has various language options. This would be a great help in explaining procedures (even with an interpreter) to anyone who does not understand the local language. Currently 17 languages are represented, with more planned.
On the negative front, I think that the webpage is overly complicated, and at present is mainly designed for healthcare professionals rather than patients. In some ways, it would be better splitting the resources into two websites, one for healthcare professionals and one for patients. Terms such as ‘Medical practitioner’, ‘Media library’ and ‘Glossary’ could be simplified into ‘Videos’ and ‘Medical terms’. Ultimately though, this should be tested with data and focus groups.
At present I find using the website difficult, and although the information in the patient information sections is accurate, it is not always presented in a consistent way. A simple example of this would be that the order of the patient information is not in alphabetical order and seemingly has no logical ordering. It could have been grouped into organs e.g. penis, kidney, ureter or even displayed with a diagram or picture which could be expanded by the patient clicking on a particular part. I would propose that this is tested carefully in the future and improved so that we find the easiest and most reliable method for patients finding relevant urological information.
Patient information is presented as a long essay on the various urological diseases. Generally, the language is simple and there are diagrams to help explain certain procedures. It might have been useful to break up the sections into common areas such as symptoms and signs, diagnosis, treatment, and follow-up. Then patients can be signposted to the area they most want to know about.
For medical professionals there are leaflets for various types of diseases. The most useful leaflet at present is the kidney and ureteral stones leaflet. Most of the other leaflets are very limited and only provide a very brief overview (two A4 sides) on complex topics such as bladder and kidney cancer.
I think the patient videos section in the media library is the most useful section on the patient information website. These are animated generic videos which explain an operation such as a transurethral resection of bladder tumour, ureteroscopy, changing a stoma bag or medical treatment of overactive bladder syndrome. The videos are narrated in various languages and provide an easy to understand, non graphic way of explaining the procedures in question. The animated videos have been a hit with patients and feedback showed almost all patients felt that the videos raised the level of their understanding and improved patient confidence prior to the procedure. A trial of a separate video by Winter et al.  showed improved understanding and knowledge with portable video media, and an 80.7% preference for video over standard verbal communication.
Unfortunately, these are the only videos that are currently available on the EAU website. I understand that more will be available soon including JJ stent placement, percutaneous nephrolithotomy, extracorporeal shockwave lithotripsy, cystoscopy, and urodynamics. When the video section is expanded, it might be worth separating the videos completely, so that they can be used easily in clinical situations with the aid of tablets in either a clinic environment or preoperatively.
The EAU’s patient information website (http://patients.uroweb.org) is a great start in educating and empowering our patients in their disease process. At the EAU 2018 there were only three talks given by patients on their experience and involvement in patient advocacy groups. I think increasing the involvement of patient groups, industry and urological organisations in this education process is the only way of improving the standard of information that patients receive. More of this verified information needs to be open source and modifiable so that it can be adapted and used in local practice across Europe, thereby empowering our patients and raising our standards of care.
1. Winter M, Kam J, Nalavenkata S, et al. The use of portable video media vs standard verbal communication in the urological consent process: a multicentre, randomised controlled, crossover trial. BJU International 2016;118(5):823-8.