Disease education and awareness materials, including websites and informational leaflets, serve to provide meaningful information to patients and their carers. A study reported that these materials can help patients self-manage their conditions and can lead to improved health outcomes.

As these materials serve an important purpose, patient engagement with these materials is quite important, especially in people living with a rare disease, who often face social isolation and misunderstanding about their condition and may experience a lack of emotional resonance with such materials. Chiesi UK along with Metabolic Support UK, a UK-based charity, conducted a study exploring the preferences of people living with rare diseases and their communities regarding the use of authentic imagery in disorder-specific materials.

In an exclusive interview with the Drug and Device World, Dr Kamran Iqbal, head of medical affairs and patient advocacy for rare diseases at Chiesi UK, and Dr Tom Kenny, patient advocacy lead at Chiesi UK, and authors of the “True Faces of Rare” study talk about the results from the study and the strides that the company is making in using ‘authentic’ imagery for rare disease education and awareness materials.

Importance of using ‘authentic’ images

Dr Iqbal notes that disease education and awareness materials often use stock images. Adding, “these [stock images] often feel quite generic and not relatable as they aren’t portraying the person (or their carers) affected by the condition”.

“People with rare diseases often face social isolation or feel misunderstood about their condition, and may experience a lack of emotional resonance with such materials. Upon talking with some patient advocacy groups, they expressed a degree of frustration about the fact that patient materials don’t have authentic imagery or imagery of people who are living with that condition. This is why we did [the True Faces of Rare] project,” says Dr Iqbal.

The study consisted of a two-question digital survey and collected data from 50 respondents, including patients and carers. The study showed that 80% of the respondents rated the importance of such images between 8 and 10 (on a scale of 1 to 10) reflecting a desire for genuine representation.

Dr Kenny notes that an important takeaway from the project is that “if you’re putting images of people in materials about a specific condition, they should be people affected by that condition. So it’s not about saying we want images that represent rare diseases as a whole. It is a diverse group with over 8,000 different disorders. So [having images representing rare diseases as a whole] could possibly be counterproductive. Hence, this is about making sure when you’re talking about an individual condition that [condition] is appropriately represented.”

“One of the themes that came out [of the study] was about authenticity and connecting,” says Dr Iqbal. Adding, “Chiesi is publicly pledging that from rare disease day onwards, where we use images in our materials, we will attempt to use the image of a person who is affected by the condition in all our rare disease-specific materials, wherever possible.”

Maintaining ‘authenticity’

Dr Kenny notes that the use of authentic imagery is important, even in diseases where the signs and symptoms of the disorder are not visibly apparent. “A large portion of the patients whose condition is not visibly apparent, rated that the use of authentic imagery was very highly relevant to them.”

“The data shows that, although the vast majority of people agreed that they wanted authentic, condition-specific imagery, it does not take away from the point that you don’t repeat the same image over and over again,” said Dr Iqbal. Adding, “there needs to be diversity in terms of age, gender, ethnicity and disease presentation to avoid concerns over stereotyping. So it’s not just about having just one image, but it’s about having the true representation and the true diversity of images in our rare disease materials going forward as well.”

Dr Kenny adds that Chiesi aims to be careful about using condition-specific images, only using imagery of people to help explain, explore, and represent that condition effectively. Additionally, the company takes care to avoid being potentially exploitative by having internal governance processes and working closely with patient advocacy groups, patients, and carers to ensure that the images are used to better articulate, explain, and represent specific conditions.

The results from the “True Faces of Rare” study will be presented at the Living Well Symposium taking place on 7 March in Stoke on Trent (UK). The event will also include presentations on aspects of living well and the representation within the rare disease community.