Amplifying the patient voice to create meaningful disease education

Challenge

For a newly recognised rare condition with limited understanding among patients, caregivers, and the broader community, there was a clear education gap with confusion about symptoms, diagnostic pathways, and supportive care. We needed to develop patient-centric education that elevated disease understanding.

Approach

We engaged with Patient Advocacy Groups (PAGs), working in a closely-related disease, and ran a series of direct interviews and roundtable meetings. We also engaged with patients from outside the PAG environment to obtain wider perspectives. Key gaps in patient knowledge were identified, along with common misconceptions, that allowed us to begin mapping preferred communication channels. The co-working continued as we developed materials, always with the patient voice in mind. 

Execution

We developed a suite of patient-focused educational assets that carefully balanced simplicity with depth, including:

• Disease overview guides written in plain language and visually enhanced to support understanding of symptoms, disease progression, and healthcare pathways

• Multimedia explainers (short animations and patient testimonial videos) tailored to different literacy levels and shared via PAG networks and social media

• Interactive webinars jointly hosted with PAG partners featuring clinicians and patient advocates to answer common questions and discuss lived experiences

Throughout the process, we worked with PAGs to refine content and make everything relevant to the audience. We also helped to train PAGs on how to use and share the materials effectively within their communities.

Impact

The education and awareness initiative fulfilled key project milestones:

• Strong engagement with PAGs: Established formal partnerships with multiple national and international advocacy groups, with co-branded materials distributed across their networks

• Increased patient reach and interaction: Educational content received high viewership and positive engagement rates on both partner platforms and social media

By embedding patient voices and advocacy expertise into the strategic process, this initiative elevated disease awareness, strengthened community trust and built relationships that have endured.