By Nat Turner & Sheniz Farah

Today marks the 12th International Rare Disease Day. This year’s theme is ‘show your rare, show you care’ and calls for the gap between health and social care to be bridged. At AXON, we care about people facing any health challenges, curable, chronic or rare. And we’d like to ‘show our rare’ by talking a little bit about a rare opportunity we had to better understand some of the different experiences people diagnosed with rare or chronic diseases face, through some ground-breaking research that we undertook with our friends at Madano (our sister agency) in 2018.

But first we want to explain that, as a healthcare communications agency, we are very privileged to support people from all over the world who live with different diseases and conditions. We get to hear their incredible stories and, in turn, share them with others using multiple platforms and channels, so that we can have a positive impact on the world in which they live, while also supporting others living with similar challenges. We have learned an important lesson through all of these activities: how we talk about diseases and conditions can alleviate loneliness and isolation, and it can also empower others to change the way they see things.

Language is a gift – it’s powerful.

Used wisely, language can have an important impact, particularly in terms of positive health outcomes. Bridging the gap between health and social care calls for the coordination between medical, social and other relevant support services, in order to tackle the challenges that are faced every day by people living with a rare disease, and their families. And that starts with a clear understanding of the situation among everyone involved.

Showing you care starts at diagnosis.

We asked our friends at Madano to help us better understand how the words and language used at the time of diagnosis can impact the course of an individual’s journey. We wanted to know how language affected their experiences of understanding their diagnosis, managing and living with their disease, and how their health outcomes can be affected. The research revealed some incredible insights and crucial learnings, but most importantly, it identified four points of ‘tension’ that should underpin how we design healthcare communications, if we really want communications to have a positive impact on patients’ lives.

This is ‘our rare’!

We use intelligent research and insights to build programs and partnerships that result in an environment where individuals feel cared for and supported. By engaging with all stakeholders at the right time, and in the right way, we can facilitate a better understanding of what individuals are going through and, for those individuals, a real sense of being heard. This is especially important in the case of rare diseases, where they may be facing particularly unique situations and it’s important we recognize them and hear their stories.

We believe that to deliver highly effective and relevant communications programs, patients should be at the heart of how healthcare companies and organisations communicate and think.

*Patients at the Heart (PATH) is the philosophy AXON employs in its approach to patient-focused healthcare communications. If you would like to find out more about PATH or AXON, Madano and our research findings, please get in touch; we want to hear from you – [email protected]