Digital Technology Uptake in Rare Disease

People engage with digital technology to manage many aspects of their day-to-day lives, whether keeping up to date with the latest news and events, connecting with friends, family, and colleagues, or finding information. People are also increasingly using digital technologies to help manage their health and wellbeing. Indeed, a significant portion of disease management happens between healthcare visits, and digital technologies provide patients and caregivers with information and support services that can be accessed in their own time, as they need them.  

With reference to health, digital technologies can include systems to: 

  • Learn and explore more about a disease and treatment  
  • Connect with others, including healthcare professionals, and share health information 
  • Remind people of healthcare appointments and other disease self-management tasks, such as medication taking 
  • Record and track health experiences and metrics, such as symptoms and blood results 


We surveyed 72 patients and 45 caregivers about their experiences of living with rare disease. Participants were from the United States (USA), the United Kingdom (UK), Germany and Australia. A wide range of rare diseases were represented in the sample, including both genetic and non-genetic conditions, cancers and autoimmune conditions. As part of this research project, we asked participants about their use of digital technologies in managing rare disease.  


Number of digital technologies used 

Across the 117 participants, just over three-quarters (76%) reported using at least one type of digital technology to support disease management. The largest proportion of respondents (34%) reported using only one digital technology. 

Respondents from Germany were the least likely to use the technology, with 36% not using any. Those from the UK used the most, with one-third (33%) using three or more different technologies. This discrepancy could be explained by some countries being more likely to incorporate digital systems in their healthcare delivery, like doctors providing options for remote consultations or prescribing / recommending patient apps. 


Websites providing advice and educational materials were the most used digital technology, with 35% of patient respondents and 51% of caregiver respondents reporting using them. Participants most often reported accessing advocacy or hospital-affiliated websites or identifying relevant websites through general Google searches focusing on disease management, new medications, nutrition and lifestyle, and alternative care.    

Patients also mentioned the use of Facebook and other social media platforms to explore how other patients were coping and to access tips and advice based on others’ experiences. Caregivers too, accessed social media platforms, often to help better understand the patient experience and to increase their ability to offer emotional support.


I have gotten involved with a patient advocacy group and have found their informational blogs and webinars very helpful, especially the panels that prioritize patient voices.


- Patient living with Complex Regional Pain Syndrome and Spinal Muscular Atrophy, USA

Voice-activated systems 

Voice-activated services like Siri, Alexa and Google assistant were the second most used digital technology by caregivers, with 36% using a voice-activated service. Less than one-third of patients (28%) reported using this type of digital technology.  

Voice-activated systems were used to a range of disease management activities including facilitating information finding, setting timers and alarms, managing household tasks when incapacitated or when symptoms flare up, and aiding communication through speech-to-text services. Caregivers also reported using these systems to access relaxation and entertainment options.  


When my hands are full it’s easy to yell out commands.


- Caregiver, USA


Approximately one-third of patients (31%) and caregivers (32%) used apps to track and provide medication reminders. Some apps were specific to medication taking, whereas others were more generic calendar or alarm apps. Respondents said apps helped them remember when to take medications and other details, like dosage and conditions of administration. Some caregivers also reported that they could use these apps to help monitor when prescriptions were running low. Overall these sorts of reminding apps were deemed to be helpful in reducing the stress and promoting timely care by combating forgetfulness.  


I use an app to give me an audible reminder of times to take medication. It stops me forgetting to take or in fact whether I have taken it.


- Patient living with Barrett's Esophagus, UK


Symptom-tracking apps were used by 21% of patients and 13% of caregivers. Respondents used these apps to track a range of symptoms and bodily functions, including nausea, pain, gastrointestinal symptoms, disease flare-ups, seizures, blood pressure and bowel movements. These apps facilitated respondents to see patterns over time, get a diagnosis and communicate health information with their healthcare teams. 

Wearable sensors and health trackers 

Wearable sensors and health trackers were used by 28% of the responding patients and 27% of the caregivers. Smartwatches (e.g., Apple Watch or Fitbit) were primarily used to monitor exercise and physical activity. Some respondents also used them to monitor day-to-day health, including respiratory rate, heart rate and sleep. Several respondents also reported using wearables for more disease-specific monitoring, such as monitoring for low blood sugar, low oxygen, seizures, and falls.  


Heart rate monitor watch to keep track of heart rate, oximeter for heart rate and oxygen levels—[they] help understand symptoms and catch episodes early.


- Caregiver, Australia


This research demonstrates that people living with rare disease are using digital technologies to support a wide range of disease management activities. Patient and caregiver experiences demonstrate that digital health technologies can help improve access to information and support, reduce healthcare costs, and make the disease and treatment experiences more personalized through facilitating tailored education and connection. Digital technologies are not being used to replace existing healthcare services, but rather complement them and help ensure that patients and caregivers can receive the support they need when they need it. 



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