Annual Report: The Board met through the Zoom conference facility to consider the draft Annual Report which will be issued to all delegates and member organisations by June 4. The Board also reviewed nominations received so far for the two new additional Board positions. At the time of this issue of Update the number of nominations is now four. While our statutes allow nominations up to the day of the election, the Board requests that member organisations consider making their nominations in advance of the GA so that there can be a chance for members to consider the candidates and for members to instruct their Voting Delegate accordingly.
Motion for GA: The Board also reviewed the motion from the UK’s Tackle affiliate calling for the examination of the case for the professionalisation of Europa Uomo to for the GA submitted by Tackle the UK affiliate of Europa Uomo. The practical issues raised by the motion were discussed by the Board and Tackle last week and an alternative motion has been agreed for the consideration of the General Assembly on 19 June.
ECPC: The Board reviewed the issues which have arisen with the European Cancer Patient Coalition (ECPC) and its forthcoming Annual General Meeting on 26 June. Europa Uomo is a full member of ECPC and it shares the concerns of a number of ECPC affiliates at the turmoil which appears to afflict that organisation. The Board decided to contact Europa Uomo members who are also full members of ECPC and to ask them to support the current ECPC Board at the ECPC AGM. The Board decided to review as a matter of urgency the outcome of the ECPC meeting and to consult with other members of that organisation in the light of the decisions made at the ECPC AGM.
Webinars on AS: The Board reviewed the first Webinar which was adjudged a great success and various suggestions were discussed for the second Webinar in May and the third Webinar on June 10.
EUPROMS 1: Our communications consultant, Simon Crompton and a small design team are preparing a draft online version of the EUPROMS 1 Study. The intention is to brief delegates on the approach to date and how member organisations can avail of different language versions of both the on-line and hard copy booklet which is preparation. Members are requested to submit their observations by June 28. Printed hard copies of the patient-friendly version of the EUPROMS study in A5-booklet form will be available in July, subject to the approval of the Board. Member organisations are asked to indicate to the Secretariat the number of copies of the English language version of the study they require and whether there is a demand for the preparation of other language versions of the study.
EUPROMS 2: Work on the follow-up survey now named EUPROMS 2 has been progressing at some speed. A report on EUPROMS 2 will be made at the General Assembly on 19 June.
EAU Patient Day on 9 July: Despite the change to a Virtual Congress the EAU Patient Office is pressing ahead with a busy programme for the Patient Day on 9 July. The programme is still being finalised but it will have the following topics:
- Presentations on Bladder, Kidney, Prostate cancers; Life After Cancer Treatment, a session on functional Urology.
- Patient Poster Session – Patient advocates have been encouraged to actively contribute to the Congress by submitting a poster abstract. This provides an opportunity for patient advocates to to share knowledge with insights into treatment and quality of life issues.
- The poster session is supported by Pfizer but the editorial content is written independent of the sponsor
- ADT Educational Programme: this is intended to help prostate cancer patients deal with Androgen Deprivation Therapy with a workshop and book for participant in the ADT Workshops.
- How will the next decade of early detection and active surveillance affect the patients, their organisations and the impact on the health services.
- Round Table: “the road to successful intervention” – discussion of shared responsibilities of both the healthcare provider and the prostate cancer patient’s care pathway.
European Patients Forum – Europa Uomo now a full member. The application by Europa Uomo to join the European Patients Forum (EPF) as a full member was successful. John Dowling and Ioannis Vanezos attended as Europa Uomo Observers/Delegates to the EPF AGM.
Resignation of Louis Denis as ex-officio Board member representing OCA: The Board learned with great regret of the decision of Prof. Louis Denis, ex-officio Board member, former Secretary of Europa Uomo and distinguished urologist, has submitted his resignation from the Board with effect from the 2021 General Assembly. The Board resolved to mark in a suitable manner, at the GA, Prof. Denis’ contribution to the development of Europa Uomo from its founding to the present day.
ESMO Patient Guide: The Chairman announced that he had been notified personally about a planned update of the ESMO Patient Guide on Bone Metastases/Bone Health and prostate cancer and to review the guidelines on prostate cancer. He confirmed the assistance of EUomo but awaits further details.
Europa Uomo GA : In addition to the Annual Report and Tackle UK Motion as mentioned above, the Board also reviewed arrangements for the election of new Board members, voting procedures, the GA Programme.
EUomo Office Move: Due to increased rental costs, Europa Uomo has been informed that OCA will move its offices to another premises before November 1, 2021. The proposed new location is near where the OCA office was until 2018. This will require minor administrative changes for Europa Uomo.
EUOMO Patient Day during the EAU meeting: It is customary to invite the EAU host country Europa Uomo affiliate to hold a local patient day, but this is not so straight-forward when the EAU Congress is Virtual. The Board is willing to organise a virtual patient day during the EAU21, and will contact the Congress department and see if a change in date to the third day of the Congress is possible and that the Patient Meeting be limited it to a maximum of 3 hours.
7th European School of Oncology Prostate Cancer Observatory: Topic- “innovation and Care in the next 12 months”. This will be held as part of the EAU Virtual Congress on July 12, 13:30-14:30 Central European Summer Time. As is customary, Europa Uomo is granted access to this meeting and our EUomo logo will be published in the Observatory-related announcements as done in the past editions.
GA Europa Uomo 2022 in The Netherlands: Will Jansen reported on the preparations being made for the Europa Uomo General Assembly in June next year. GA Europa Uomo 2022: This will take place in the AFAS theatre in Leusden (see pictures below), close to Apeldoorn/Utrecht, The Netherlands. After the summer holidays a more detailed program will be presented.
Any Other Business:
- It was reported that Norway has decided to implement the programme on early detection. HVP and JD asked for some more information so that we can publish an article in the Update.
- It was also announced that at the next EAU General Assembly Prof. Hein Van Poppel (HPV) will leave the chair of the EAU Patient Office. His place will be taken by Eamonn Rogers, from Galway in Ireland. At the same meeting, HVP will also leave the position of Adjunct Secretary-General responsible for Education and Prof. James N’Dow from Aberdeen University, Scotland, will be appointed as his successor. HVP announced that he has applied to become the chairman of the European Policy Office. He suggested that as he will leave the executive of the EAU, that the ex-officio Board member representing the EAU in the future should be the Chair of the Patient Office.
- The meeting concluded with the Board’s special thanks to Prof. Van Poppel for his visionary initiative in persuading the EAU to establish the Patient Office which has, in a few short years, inured greatly to the benefit of both the patient world and the EAU’s appreciation of the patient role.