Collaboration boosts rare disease patient-clinician communication

A partnership between a healthcare consultancy, a pharmaceutical company, and a patient advocacy group has shown how collaboration across the healthcare ecosystem can drive measurable improvements in rare disease care. The project, recognised as Partnership Project of the Year (Pharmaceuticals) at the Excellence in Healthcare Partnerships (EHP) Awards—launched in February 2026 by PMGroup Worldwide Ltd and Visions4Health—focused on hereditary angioedema (HAE), a genetic disorder that causes swelling attacks, and developed resources to improve shared decision-making between clinicians and patients.

The initiative brought together four key players: ZPB Associates, which led research and campaign development; BioCryst UK & Ireland (now part of NeoPharmed Gentili), which provided the ambition to improve long-term care for HAE patients; HAE UK, the patient advocacy group ensuring lived experience shaped the work; and Barts Health NHS Trust, contributing clinical leadership. The team began by asking a straightforward but critical question: how do patients and healthcare professionals actually experience shared decision-making? This approach was deliberate, as Gita Mendis, Creative Services Director at ZPB Associates, noted that combining clinical expertise, patient insights, and industry support was essential to create resources that would be both evidence-based and practically useful.

Through surveys, interviews, and co-creation workshops, they identified gaps in communication, differences in perspectives between patients and clinicians, and barriers to meaningful discussions. These insights formed the basis of a toolkit designed to support more effective conversations in clinical settings. The resources were then distributed through HAE UK’s network to immunology centers across the UK, ensuring widespread adoption in NHS settings. The partnership’s strength lay in its ability to merge diverse expertise, clinical leadership from Barts Health, patient advocacy from HAE UK, and strategic communications from ZPB, into a cohesive, actionable solution.

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The results were immediate and measurable. After the campaign launched, 87% of consultant immunologists reported seeing the materials, and 92% found them valuable in practice. More than half, 62%, said the campaign had changed how they or their colleagues interacted with patients, leading to more consistent and patient-centered decision-making. Beyond clinical settings, the effort generated national media coverage, doubling Google searches for “shared decision making” and increasing searches for “hereditary angioedema” by 45%. The campaign’s success extended beyond immediate metrics, embedding the toolkit into NHS immunology centers and demonstrating how insights could translate into real-world improvements.

The project’s success rested on more than just good intentions. Unlike many initiatives that gather input after the fact, this partnership involved patients, clinicians, industry representatives, and communications specialists at every stage. Research findings were tested in workshops, and campaign materials were refined based on real-time feedback from those who would use them. The focus wasn’t on producing a report but on ensuring the resources were adopted in real-world settings.

For those considering similar initiatives, the team behind the project offers clear advice: start by understanding the problem through the perspectives of both patients and clinicians. Engage all partners from the beginning, co-develop solutions, and measure success in real-world adoption, not just in reports. The EHP Awards 2027 are now open for entry, providing an opportunity for other organizations to showcase their own collaborative achievements in healthcare.