Finding the Familiar in Rare Disease

Estimates suggest that a so-called rare disease affects one in ten people, and so everyone who reads this is likely to know someone living with a little-known condition. I am in that category. A rare blood clotting disorder, thankfully mild, runs in my family. However, even as someone working in health communications, until now I have never thought of myself as someone with a rare disease. I am lucky the condition does not affect my life, but if it did, would I like that to be the defining feature in the eyes of my friends, family and HCPs? The answer, in common with most people I am sure, is no.

This leads me to one of the conundrums of good health communications: how to build awareness and nurture confidence to manage a condition without creating an environment in which health dominates and comes to define a person’s identity? There is a continuing struggle for people affected by rare diseases to build a confident platform, to manage their condition and not to be defined by it.

While trying to think broadly, but also recognise the variability and personal journeys people have with their condition, there are a few insights we can add to the process:

1. Understand the moment of greatest impact

The importance of the diagnosis delivery is not a new subject. Nonetheless, it marks a significant moment in an individual’s experience with their condition. Where rare diseases seem to differ is how diagnoses are communicated, conveyed in broad terms and lacking reassurance. When looking at patient adherence, this point of communication is shown to have an impact on how an individual will manage their condition going forward.

To a certain extent this can be achieved by ensuring HCPs have access to current, validated information, curated in a way that helps them to easily retrieve the information they need. Supporting medical professionals will have a positive impact on the patient experience as in return, an individual who is well informed about their condition, is motivated, and has the requisite skills is more likely to maintain better health management.

Nevertheless, the greatest moment of impact might not come at the point of diagnosis. When considering rare disease in particular diagnosis is frequently a long drawn-out process. Each person’s journey is personal and when thinking about driving advocacy in rare disease, as well as other conditions, it is important to consider where the person is along their own journey.

2. Informative and personal: a platform and a voice  

To these ends, the final piece in this puzzle is to ensure people can access this information when they want and need it, and not be inundated. We have the digital capability to deliver the right information to people at a time when they want to engage with it, whether that is HCP, a person living with a condition or those around them. For example, parents of children with a rare disease may only want information that pertains to the immediate life stage. Others, on the other hand, may want to know long-term prognoses and predictions. By making use of this technology, we can help people draw out the information they need, as and when they most want it.

Fundamentally, technology can be hugely empowering, if designed in a way that suits the person affected. It gives them access to the information they need at the press of a few buttons, allowing people to remain anonymous if they wish, or engage in a wider community of people living with similar challenges. Digital media allow information to be communicated in a variety of ways, which can encompass varying levels of literacy, allow for the user to determine their level of engagement and provides the confidence to know robust information is there if they want it.

It is a great challenge to consider 7,000 diseases in one blog and in equal measure foolish to assume a one-size measure be applied to “rare disease”. As communications consultants it is vital that we use insight and our ability to foster relationships with a broad range of stakeholders to clearly communicate the right message, implement technology effectively and fundamentally answer the needs of those who on their journey, wherever they may be.