Power of partnership: Turning shared purpose into improved shared decision-making in rare disease
pharmafile | September 5, 2026 | Feature | Internal Communication Campaigns, Market Access Consultancy, Medical Communications, Medical Communications Training, Patient Advocacy | Rare Diseases, ZPB Associates
In February 2026, PMGroup Worldwide Ltd and Visions4Health launched the Excellence in Healthcare Partnerships (EHP) Awards to recognise innovative collaborations and transformative partnerships between UK healthcare providers and the life sciences industry. Among the inaugural winners were ZPB Associates, BioCryst UK & Ireland (now a NeoPharmed Gentili company) and HAE UK, winning Partnership Project of the Year (Pharmaceuticals). Here, Gita Mendis, Creative Services Director at ZPB Associates, outlines how the partnership delivered measurable improvements, and what can be achieved when organisations unite around a common goal.
Partnership delivering more than any organisation could achieve alone
This initiative was designed to improve shared decision-making for people living with hereditary angioedema (HAE) and brought together expertise from across the healthcare ecosystem. BioCryst UK & Ireland provided the ambition to improve long-term care for HAE patients, HAE UK ensured the patient perspective remained central, Barts Health NHS Trust contributed clinical leadership, and ZPB Associates led the research and campaign development.
The programme began by asking a simple but important question: how is shared decision-making actually experienced by patients and healthcare professionals? Through surveys, interviews and co-creation workshops, the team identified barriers to effective discussions, highlighted differences in patient and clinician perspectives, and used these insights to develop resources that support more meaningful conversations in the clinic.
Crucially, the partnership enabled something that would have been difficult for any single organisation to achieve alone. By combining clinical expertise, patient experience, communication skills and industry support, the group created a toolkit that was evidence-based, practical and shaped by lived experience. Through HAE UK’s network, the resources were then introduced into immunology centres across the UK.
Evidence of meaningful impact
The partnership has delivered measurable improvements in clinical practice. Following the campaign, 87% of surveyed consultant immunologists reported seeing the campaign materials, 92% found them valuable in clinical practice, and 62% reported that the campaign had changed how they or their colleagues interact with patients, resulting in more consistent and meaningful shared decision making.
The programme also achieved wider impact beyond the clinic, generating national media coverage, increasing awareness of HAE and shared decision making, and helping embed the toolkit across NHS immunology centres. Google searches for “shared decision making” doubled following the campaign launch, while searches for “hereditary angioedema” increased by 45%.
According to the team, the success of the project rested on more than good intentions. Patients, clinicians, the charity partner, industry representatives and communications specialists were involved throughout the process rather than consulted at the end. Research findings were tested through co-creation workshops, and campaign materials were continually refined using feedback from the people who would ultimately use them.
Perhaps the clearest measure of success is that the partnership focused not on producing a report, but on achieving real-world adoption. Clinicians reported improved awareness of patient needs and greater adoption of the resources within hospital systems, demonstrating how insight can be translated into practical improvements for patients.
Reflecting on the project’s success, Gemma Gapper, Director, Patient Access, NeoPharmed Gentili, said: “We are so grateful to the HAE clinical and patient community in the UK for participating in the activities to develop the campaign and build shared decision making into the management of this rare condition.”
Recognition that inspires others
The partners believe award programmes such as the EHP Awards play an important role in showcasing what effective collaboration looks like. Healthcare challenges, particularly in rare diseases, are often too complex for any single organisation to solve alone. By highlighting successful examples, awards help build confidence in partnership working and encourage organisations to learn from proven approaches.
For organisations considering entering future EHP Awards, the team offers clear advice: start by understanding the problem through the eyes of patients and clinicians. Involve all partners from the outset and build solutions together rather than in isolation. Finally, focus on creating practical resources that people will actually use and establish measures of success from the beginning.
As healthcare systems continue to tackle increasingly complex challenges, the winning HAE project offers a powerful reminder that meaningful change often happens when organisations stop working alongside each other and start working together.
To get in touch with ZPB Associates, visit their website.
The EHP Awards 2027 are open for entry. Visit the EHP Awards to learn more about the categories and how to enter.
- Gita Mendis is Creative Services Director at ZPB Associates. ZPB is a healthcare strategy and communications consultancy helping organisations navigate and grow within the UK health ecosystem. We combine research and insight, strategy and market access, integrated marketing, PR and policy engagement to turn complex challenges into opportunities. By blending evidence, creativity and deep system knowledge, we build visibility, strengthen credibility and create market-moving campaigns, content and stakeholder engagement programmes that deliver measurable impact and growth for our clients
