Providing the patient perspective on medicines

André Deschamps, Europa Uomo Chairman, represented the organisation and men with prostate cancer at the European Medicines Agency’s patient consultative group in September.

The EMA Patients and Consumers Working Party (PCWP), which includes 22 European organisations representing patients, is a platform for discussion between medicines regulators and organisations on issues relating to medicines. It provides recommendations to EMA.

Among the items discussed at the meeting were monitoring medicines safety, the relationship between digital media and health, and access to medicines.

Important findings expected on impact of prostate cancer

Europa Uomo’s ground-breaking quality of life survey has gained significant interest from clinicians, patient groups, organisations and companies. In a series of meetings at the ESMO (European Society for Medical Oncology) Congress – one of the biggest events in the cancer calendar – a Europa Uomo delegation spread the word about the survey and its importance.

Europa Uomo Board members pictured at the ESMO Congress (left to right): André Deschamps, John Dowling and Ioannis Vanezos

“We made pitch after pitch, and the response was very good,” says John Dowling, who attended with fellow Europa Uomo Board members André Deschamps and Ioannis Vanezos.

“We’ve had a fantastic response to our survey – and have already exceeded the minimum threshold of responses required. We’re expecting the results will have something very important to say about the quality of life of men with prostate cancer – something meaningfully different than previous clinician-led surveys.”

“What makes this survey special is that it is patient-mediated. People are very interested in that.”

The latest figures show that 1,861 men have so far responded, providing anonymous insights into the impact of prostate cancer and its treatments on daily life. The survey is due to continue into November, when the results will be compiled and prepared for publication. Preliminary findings are expected to be ready later this year, with full results announced at a meeting next year.

There’s still plenty of time to complete and further publicise the survey: the more respondents, the more authoritative the findings will be. Find out more information about the survey, or go direct to the survey.

Patient advocates share their skills and knowledge

A hundred leading cancer patient advocates from 26 European countries spent four days in Frankfurt, Germany at the first training courses to be developed and run by advocates themselves.

The event was organised by WECAN (wecanadvocate.eu), an informal network of leaders of cancer patient umbrella organisations active in Europe. Europa Uomo was among the patient advocate organisations represented.

The representatives from Europa Uomo and organizers of WECAN Academy 2019. From left to right: Ananda Plate, Izabella Pawlowska, Dag Utnes, Bernd Troche, Michaela Geissler and Thrainn Thorvaldsson.

Out of 87 participants, only 13 said they had attended cancer advocacy training before. Some sessions provided practical guidance on how to run a non-profit organisation, how to gather evidence and how to get your voice heard. Others provided primers on areas such as healthcare systems, access to new treatments, drug development, clinical trials and how patient advocates can influence the research agenda.

Quality of life: tell people about our survey

Have you completed the Europa Uomo quality of life survey yet? Have you shared it with your networks? Have you sent it to anyone you know who has had a PCa diagnosis?

Now is the time. Just click on this link, or copy and paste it to your contacts.
https://www.qualityoflifesurvey.co/wix/p1874284546.aspx

The survey was launched on 21st August, and according to Europa Uomo Chair Andre Deschamps the early response to the survey from member organisations has been strong.

“The thanks of the Board must go the officers and members of all national and regional prostate cancer support organisations for their contribution to making this survey a great success,” he said, adding that more responses were now needed from the wider community of men with prostate cancer.

Quality of life survey: your questions answered

Europa Uomo is inviting men with prostate cancer around Europe to take part in its quality of life (QoL) survey, which will gather information about the effects experience of prostate cancer and help to fill a significant research gap.

You can access and complete the survey here.

Below is further information about the survey. If you have any other questions, please contact: europauomo@skynet.be

Will the information in the survey be safe and secure?
Absolutely. Individual’s data collected cannot be seen by anybody connected with Europa Uomo. The data will be processed by an independent third party, Cellohealth, a UK-based expert in surveys of this kind. The data will be anonymised and aggregated to ensure confidentiality. Once the material from patients is collected by Cellohealth, links to the individuals who completed the survey are deleted.

Quality of life survey: your chance to make a difference

Europa Uomo invites men with prostate cancer around Europe to take part in what its Board describes as “probably the most important initiative ever launched by the organisation”. The Europa Uomo quality of life survey, launched today, will gather information about the effects experience of prostate cancer and help to fill a significant research gap.

You can access and complete the survey here.

“The quality of life (QoL) of men with prostate cancer has been a big issue with prostate cancer organisations for some time” said Europa Uomo Chair André Deschamps. “This survey is a major step in giving greater prominence to QoL issues for men and their families dealing with the effects of prostate cancer.”

“The success of this on-line survey, however, depends on a strong response rate to the survey by its member organisations in 27 countries.”

The survey asks questions about the impact of prostate cancer and its treatments on daily life. It may be completed by men (or their partners on their behalf) without their having to be members of a national prostate cancer organisation. However, Europe Uomo is depending on its member organisations to circulate the questionnaire widely. A minimum of 1,000 responses is required to have sufficient material to draw meaningful conclusions. These responses need to be drawn from a wide range of respondents from across Europe.

The survey is online only. Anyone without an email account or a computer/tablet/smart phone can use a friend’s device or a public library or other location to complete the survey.

Click here for more information about the survey
Click here to complete the survey

New evidence that MRI before biopsy is best

New research provides further support for European moves to ensure that prostate biopsies are guided by MRI scans rather than standard ultrasound. It finds that the use of pre-biopsy MRI combined with targeted prostate biopsy is better than a biopsy alone in detecting prostate cancers that are likely to need treatment.

The research was published in JAMA Network Open, led by the National Institute for Health Research (NIHR) and the Universities of Bristol, Ottawa, Exeter and Oxford. The systematic review combined the results from seven studies covering 2,582 patients, focusing on men who had not had a prostate biopsy before.

Wanted: the best fundraising ideas

How do you raise funds for your group? Europa Uomo member organisations around Europe need to raise money to fund their activities and support men with prostate cancer. But there’s no single formula for success.

Photo on Foter.com

This year Europa Uomo’s member organisation in the UK, Tackle Prostate Cancer, launched an ambitious new fundraising campaign encouraging members to raise money through charity cycle rides. In Ireland, Men Against Cancer organises an annual 5km walk along the seafront in Dublin Bay and asks for sponsorship and support. In Sweden, Prostatacancerfobundet raises funds by selling blue moustache badges in November. 

Europa Uomo provides patient audit of prostate units

Europa Uomo resumed its programme of auditing prostate cancer units (PCUs) with a visit last week to the Franciscus Gasthuis hospital, one of a network of seven Dutch PCUs in the south-western Netherlands.

This is part of the Prostate Cancer Units Network project – an initiative started by the European School of Oncology (ESO) in partnership with Europa Uomo. It has created the first international network of clinical units dedicated to the diagnosis and treatment of prostate cancer, and aims to promote the multidisciplinary management of prostate cancer patients.

Annual Report of the board 2018/2019

Andre Deschamps
André Deschamps

The last year has passed incredibly quickly. It is already a year since I was elected as chairman of Europa Uomo during the General Assembly in Dublin.

Together with the Board and our members, we have worked hard to grow further the organisation and fulfil our mission of being the voice of men with prostate cancer in Europe.

We have increased our communication efforts through our newsletter and our website. It is possible to read our website in many languages and our newsletter attracts more and more readers. But there is still a lot of work to do.

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