Putting the community at the heart of pre-launch global education in rare disease

The challenge

Our client was a small pharma company, progressing through Phase 3 for a therapy with potential in a rare disease, where few therapeutic options exist. While the disease is mostly effectively diagnosed, multidisciplinary care and a clear patient pathway are lacking, as is data to quantify the impact of the condition on people living with it and their families. We needed to quantify this, and then educate physicians, regulators and policy makers.

Our approach

During the pre-commercialisation phase, we collaborated with the patient groups, and KOLs to better understand the impact of the condition. This included an ambitious piece of research that set out to quantify the burden of the condition globally.

People living with the condition also informed the branding for the medical education assets.  We had to get the balance between communicating the impact of the condition, whilst respecting the community’s wish to not be seen as being defined by the rare disease they live with.

Activities included creation of a closed online hub to house all research data. Working with individuals through a patient focus group to inform the strategy for medical education. Creation of medical education platform and congress assets created at global level, with ~ 20% adaptation at local level. We also supported the development of symposium content and assets.

The results

It is the genuine collaboration with the community to inform the activities that makes this work special. As one of the ‘stars’ of the assets said, “The…headline of the work from [company] is the impact and knock-on effects, which are often unseen. And people’s stories help to expand on this. I was very happy to participate… I appreciate [the company’s] partnership…”

> 3,500 unique visitors to the online hub over a 12-month period

> 1,200 downloads of data cuts and other assets from the hub

Content used across 4 congresses, helping medics build a database of 600 contact consents

Content used across 2 symposia, with 78% of delegates indicating that attending had improved their understanding of the hidden aspects of the condition

What this shows

It is critical to a successful product launch that companies listen to the patient voice early and often. In having the global community inform not just the burden of disease research, but the medical education assets, we have a richness of insights and educational content that speaks to what patients want physicians to understand, as well as being strategically aligned to what matters to the client.

Need to balance the community’s views with strategic imperatives? We’ll show you the way.