Many will also face barriers to care, where access to specialists is limited and often geographically out of reach. That’s where technology coupled with user-centred design can help – bringing solutions and convenience to these pain points and positively impacting people’s well-being.
More frequent data points are needed to get the whole picture on rare diseases.
Consultations and clinical trials are often few and far between. Data points are snapshots months or years apart, captured in an out-of-home location, creating an overly simplified and biased representation of the person’s well-being or reaction to treatment. By including a higher frequency of entries from the person’s day-to-day life, we can correlate behaviours and outcomes with treatment more effectively.