Empowering patient groups: new guide on building partnerships with healthcare professionals released

Healthcare professionals are often the first people someone meets after a bladder cancer diagnosis, and they remain a trusted source of information and support throughout the journey. When patient groups and clinicians work together, more patients and carers are signposted to the help they need. To make these relationships easier to build, we are pleased to release a new community building guide, “Building partnerships with healthcare professionals”

A step-by-step approach

The guide walks your organisation through the process of forming partnerships from the ground up. It explains how to:

• Understand your local landscape. Map the hospitals, urologists, oncology specialists, specialist nurses and scientific societies involved in bladder cancer care in your region, and reach many of them at once through professional associations.
• Prepare a clear and professional message. Keep your first contact short and respectful: who you are, who you represent, what you are asking for and the value you bring.
• Approach through the right channels. Scientific societies, hospital networks and congresses are natural places to introduce yourself, followed by a brief, consistent follow-up.
• Focus on mutual benefit. Offer patient-friendly materials, peer support and patient insight, and welcome referrals, medical input and greater credibility in return.
• Create simple referral pathways. Make it easy for clinicians to refer, through waiting-room materials, QR codes, discharge packs or a direct introduction from a specialist nurse.
• Support professional development. Contribute to continuing education so your organisation is seen as a partner in improving care, not simply a recipient of referrals.

Partnerships built on mutual benefit

The guide is clear that the strongest collaborations are reciprocal. Patient organisations can represent the patient and consumer perspective in discussions with pharmaceutical companies and in Health Technology Assessment (HTA) processes that shape access to new treatments. In turn, clinical support lends credibility and opens doors. Throughout, the guide reminds groups to respect clinical boundaries, never offer medical advice, and protect their independence and transparency.

Case studies from around the world

To show what this looks like in practice, the guide shares three examples:

• Italy: Associazione PaLiNUro developed Uro H Advisor, a platform that helps patients understand hospital experience in bladder cancer care. By involving healthcare professionals from the start, the project became a respected national resource rather than a controversial one. As patient advocate Laura Magenta of Associazione PaLiNUro reflects, working with clinicians from the beginning kept the tool constructive, credible and focused on improving care.
• Spain: CANVES engaged clinicians in the creation of the association itself, with urologists and oncologists on its board. For its Bladder Cancer Patient Day, clinicians helped design the programme while content remained independent and patient-led. Co-founder Laurent Gemenick notes that involving clinicians in the programme design built trust quickly and showed professionals the group was serious about improving patient experience.
• Australia: BEAT Bladder Cancer Australia took education as its starting point, developing accredited online modules and in-service training for nurses. President Adam Lynch explains that by investing in education, the organisation contributed to better standards of care, and real partnership followed.

Why this matters

Worldwide, 614,298 people are diagnosed with bladder cancer each year and around 1.9 million people are living with the disease. Behind every one of these numbers is a person, and one in four is a woman, navigating diagnosis, treatment and life beyond it. Strong partnerships with healthcare professionals help ensure they are not left to do so alone.

This guide joins our growing series for patient organisations. We encourage you to explore our companion guides on creating an online community and how to raise funds for your patient group, and to share your own partnership stories with us at info@worldbladdercancer.org.