Living with a rare diagnosis brings with it a unique set of challenges. Research can be sparse, support groups can be hard to find and perplexed doctors fill your everyday life. Patients and families are given very little information about their condition. And are frequently left to research their condition alone.
As a result patients and families turn to digital sources for info along the health journey, often becoming an expert in their own right. But this is a daunting task with the challenge of deciphering scientific content, making sense of a whole new world of terminology and worries over what is correct and reliable information.
To effectively engage with these patients we need to have a deep understanding of what it is like to live in their world.
Behavioural science is the key to uncover the "why's" of behaviour
Behavioural science has taught us that people don’t always behave in the way you would rationally expect them to. Even more, very often they don’t behave in the way they expect themselves to.
Things begin to get even more complicated when the discussion comes to the digital world. Shlomo Benartzi’s studies into digital behaviour have shown us how the cues, frames, and nudges that influence our choices on screens are drastically different from the ones that work in the analogue world. Visual biases play a significant role in the online behaviour, affecting the way we look for information and make decisions.
But how does this help with the all important question of patient engagement?
Understanding the rare disease from the patient’s perspective will provide vital insight into creating patient-centric programs that meet the needs of the patient and family but that can be tailored to the individual circumstance, and to the points on life and patient journeys. As many of the patients with rare diseases are children, with different levels of cognition according to their age and the type of disease, the design of the support programme, from personal support to apps and wearables, needs to take this into account.
To be effective in rare diseases, where patients are likely to be spread across long distances, patient support programs need to be well co-ordinated, and the mode of delivery for the information and support has to be considered carefully. Here, digital approaches can be very powerful, with one-on-one contact through technologies such as Skype, and educational material available through apps and websites.
We are currently working with a life sciences client to understand how to better support patients and carers with their search for information and how we can provide medical and scientific information in a way they can understand to increase comprehension.
We are using behavioural discovery techniques and linguistic analysis to understand how specific types of content impact real world behaviour. We are still analysing the results, but so far they look to yield some exciting insights.