We heard this from people with disabilities or chronic health conditions and people who need some level of care.
The lives of people with sensory loss, dementia or different abilities can be transformed by data sharing. However, accessible technologies are often unavailable or people lack choice over how they share their data. Nonetheless, these services can offer a radical benefit, improve lives and are often positively viewed by those who use them.
People with this data relationship said
We really want a joined up health and care system.
We don’t want to have to constantly repeat our stories and disability needs, but for them to be easily shared.
Many of us see surveillance as a means of safety and support - it reassures us that we are being looked after.
We want access to inclusive technologies but also a fair choice over what data we have to sacrifice in order to participate.
So what can we do?
Designing for people with this relationship means developing inclusive and accessible user interfaces and pursuing more seamless routes for data sharing and collection. Digital services should also explore how to better integrate carers and family members into personal health management.