Rare, But Out There: The art of reaching rare disease patients through understanding human experience
February 26, 2024 |
Director Helena Wright talks about the importance of understanding the beliefs, emotional drivers and cultural factors that underpin the experience of living with a rare disease, as we mark Rare Disease Day this year.
“We need to take responsibility for educating ourselves as much as we can.”
“You can’t rely on health professionals all the time because they don’t always know the condition as well as you do.”
“I like interacting [with other patients] and listening to real stories. It helps to see real people with real life situations going through the things that we’re going through or might go through, it makes you feel less alone.”
These are just some of the comments from patients at advisory board meetings we’ve chaired over the last couple of years, involving people that are living with rare diseases. What we hear, loud and clear, is the strong belief that they need to become the experts in their own disease, because having a rare disease can be a lonely, scary, and isolating experience.
By uncovering these cognitive beliefs and emotional drivers we can begin to understand the human experience of these patients. Add to this the cultural, physical, and social factors that influence their beliefs and behaviour, and we can begin to immerse ourselves in their experiences and leverage these insights to develop communications programmes that will make a meaningful difference. Connecting with others in a similar situation, sharing information and trading experiences can help people feel empowered and supported, and carefully crafted communications campaigns can facilitate these connections.
Our work in sickle cell for the Code Red campaign, to reach an underserved and disillusioned patient community, is a great example of where we have immersed ourselves in the lived experiences of patients who have a rare disease. Through our partnership with the leading UK patient advocacy group, we learned about important nuances within the social and cultural realms of their experience. This enabled us to tailor our campaign in the right way, giving a much-needed voice to this underserved community so they could connect and unite to break the silence and isolation surrounding their condition.
For patients living with immune thrombocytopaenia, another rare blood disorder, we identified the strong need for positive role models to offer hope and reassurance to those newly diagnosed and fearful about the future. Working with a gold medal winning marathon runner to share his story of achieving greatness, despite his condition, we helped to inspire this rare disease community to focus on managing their condition to allow them to live life to the full.
Connecting with patients on an emotional level is key to the success of any disease awareness campaign. Although we may have to work a bit harder to identify and reach those living with rare diseases, we can use our Human Experience framework to help us delve deeper. Hx allows us to understand patients’ lived experiences, motivations, and behaviours, so we can build communications campaigns that effectively influence change.
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