Privacy Notice
Data Protection Information pursuant to Article 13 of the General Data Protection Regulation (GDPR) regarding the processing of patient data.
Controller: European Association of Urology, Patient Office (EAUPO)
Mr. E.N. Van Kleffensstraat 5
6842 CV Arnhem
The Netherlands
Phone: +31 26 3890 680
Email: REVEAL@uroweb.org
Website: www.uroweb.org
Data Protection Officer
Sarah Collen
Purposes of Processing and Legal Basis:
The data will be processed for the purpose of scientific research on Over Active Bladder (OAB) focusing on quality of life for people affected. The goal of REVEAL-OAB is to better understand what life is like for people living with an Over Active Bladder (OAB). For this purpose, we divide our study into two sections.
- Survey. In the first phase of the study, we will conduct a large online survey, where over 2,000 people with OAB will be asked to share how the condition affects their quality of life. If you prefer, you may only take part in the survey and opt out from the second part of the study. This survey will be an online survey which will be developed and housed on the EAU UroEvidenceHub secure server. The aggregated data (information grouped together so no one can be identified) of survey results will be accessed by the research team analysing the data.
- Personal stories: At the end of the survey, you will be asked whether you want to do an interview with the qualitative research team, to discuss your personal experiences of everyday life with OAB. 40 participants will be selected, from different groups of gender, age and ethnicity, to participate in a one-one-one audio-recorded interview. It also uses a creative method called PhotoVoice. If you are willing to join this optional process, you will be invited to share your contact details in order to be contacted, and you will also receive a link to upload photos onto the EAU UroEvidenceHub. These photos should not include identifiable images of yourself or others The interviews will be recorded on Zoom. Afterward, what you say will be written down in text form. The researchers will remove any information that could identify you. They will then analyse the interview texts. The anonymized text files (with all identifying details removed) will be stored for future research. The original audio recordings will be deleted once the project is finished. The photographs you take will be edited into sketch replicas, which resemble or reproduce the setting of your photograph, but with all identifying details are removed. These sketches will be stored and archived together with the interview transcripts. The original photos will be deleted, and we will only save the sketch replicas of the photographs. With your permission, some of the fully anonymised sketch replicas may be used in our future public reports.
The survey data gathered will also include questions and information on sensitive data such as your health, ethnicity and sex life.
The legal basis for processing your data arises from Art. 6(1)(a) of GDPR. This means that you may withdraw your consent at any time, without giving reasons. As a general rule, we will then no longer process your data.
Recipients in case of data transfer:
| Stage | Recipient | Purpose |
| 1 | Interviewers (members of the OAB-REVEAL central study team, coordinated by the EAU Patient Office) | Data collection (audio-visual) |
| 2 | Researchers (members of the OAB-REVEAL central study team, coordinated by the EAU Patient Office) | Survey responses analysis, analysis of interviews and photographs |
| 3 | EAU UroEvidenceHub (Mr. E.N. van Kleffens-straat 5, 6842CV, Arnhem, The Netherlands) | Data Storage of survey, interview and photos during the study; data repository of the survey and interviews after the study |
| 4 | International partners (only aggregated and anonymised data) | Further research |
| Service Providers: We have data processing agreements with the service providers we work with to make sure they handle your data safely and follow GDPR rules (Article 28). |
| Intention to Transfer Data to a Third Country, Including Legal Basis: No personal data will be transferred to a third country i.e. outside Europe. |
Duration of Storage: Photos and interview recordings will be deleted at the end of the study. The anonymised interview transcripts (text files where you cannot be identified) will be kept at UEH for 30 years. Aggregated data (information grouped together so no one can be identified) will be kept at UEH for 30 years. |
Information on Data Subject Rights: You can ask at any time to see the personal information we have about you. You can also ask us to correct it, delete it, limit how we use it, or stop using it altogether. In addition, you have the right to receive your data in a format that you can take with you or share with others. If you have given us permission to use your data, you can change your mind and withdraw that permission at any time. This will only affect how we use your data in the future. If you want to do this, or if you want to use any of your other data rights, you can contact our Data Protection Officer using the details provided above. |
Right to Lodge a Complaint with a Supervisory Authority: In accordance with Article 77 of the GDPR, you have the right to make a complaint to the data protection authority in your country If you think your personal data is not being handled correctly or unlawfully. |