Our patient awareness campaign for Actelion Pharmaceuticals aimed to use patient stories to help highlight the amazing careers and hobbies that inspirational young adults living with pulmonary arterial hypertension (PAH) engage in despite their disease.

Objectives

The main objective was to highlight career and hobby achievements to help motivate and inspire other young people living with PAH and encourage active self-management of their disease.

Planning and thinking

During 2016 and 2017 Four Health Communications worked with Actelion to better understand the information and communication needs of young adults living with PAH. This work culminated in a report launched in November 2017 that recommends shining a spotlight on patients’ careers and hobbies.

Implementation

Building on this, Four Health Communications supported Actelion and interviewed nine young adults living with PAH from across Europe, to learn their story and understand how their careers and hobbies are impacted by their disease, and how they work around these issues.

The patient stories were developed into nine flyers, to be given to other young adults with PAH. The stories were initially shared on World PH Day via Actelion’s social media channels and hosted on an independent website, where PAH clinicians, patient organisations and patients themselves can download the materials and read the inspirational stories.

Adapting

The campaign materials have been disseminated across Europe by patient organisations and PAH clinicians, as well as Actelion’s country affiliates who are translating the materials in order to reach as many of the relevant audience as possible.

Learning

By working with real patients on real issues, patient advocacy projects are far more likely to succeed and have a true impact. Furthermore, by working on projects that are backed up by research and patient focus groups/insights, you can be sure that the community’s needs are being accurately reflected and ultimately met, in line with the campaign objectives.