Examples from the patient community at World Bladder Cancer Patient Forum 2022

The World Bladder Cancer Patient Forum brought our international community of patient groups together on September 8. The “Rising to the challenge – Examples from the patient community” session featured three projects from WBCPC member organisations in Australia, Canada and Italy. They showcased the diversity of incredible efforts of patient organisations to support people affected by bladder cancer and drive much-needed change locally. These included:

• Dr Stepahnie Demkiw, the co-founder of Bladder Cancer Awareness Australia, presented the Australian project. They co-developed updated guidelines from a general practice perspective about how to treat haematuria. This resource summarises the cause of the disease, investigation, and management of blood in urine in the primary care setting, focusing on urological assessment and outcomes. It is available as a brochure and a peer-reviewed publication.

• Laura Magenta from Associazione PaLiNUro in Italy presented the URO-H-Angels project launched in 2019.The programme with accreditation at major Italian hospitals with an onco-urology department. URO-H-Angels aims to create an additional support opportunity for bladder cancer patients with a severe tumour or the prospect of having a radical cystectomy. It offers interreaction with volunteers who have been through the same pathway as complimentary support. The project is currently active in 11 hospitals in Italy. The long-term mission is for URO-H-Angels to be present in every hospital in Italy where patients affected by bladder cancer need support.

• Michelle Colero, the Executive Director of Bladder Cancer Canada, presented the Canadian Bladder Cancer Information System (CBCIS). It is a database that collects depersonalised information about current bladder cancer practice and treatment outcomes. CBIS aims to identify the gaps in bladder cancer care, evaluate unmet needs and improve the management of bladder cancer patients in Canada.

We would like to thank our speakers who shared their views and expertise and our audience for such valuable conversation throughout the event.

If you missed it or would like to revisit the event – the recording will soon be available on the WBCPC YouTube Channel.

If you didn’t get a chance to share your perspective, we invite you to get in touch with us at info@worldbladdercancer.org