For a disease as silently debilitating as Dementia - Care, Support & Trust play a vital role in the lives of the persons with the condition and their caregivers.
These words - Care, Support & Trust should also form the guiding principles of digital healthcare solutions. Through trusted use of data, digital technology can enable customers to move from being passive recipients (or providers) of care to active managers of their own health and wellbeing. Technologies like mobile apps can change the narrative of the dementia journey, one that still remains filled with unknowns due to lack of a cure and fraught with day-to-day burden of care. Health apps can responsibly capture data about everything from care planning to disease progression. Such data can inform users of efficacy of their care actions and give them a semblance of control.
So why do we need to talk about data?
Customers own their data, they must have the option to decide what information to give to the digital app and how they want that information to be tailored to their needs. To do so, there must be a robust data privacy framework underpinning the digital app in full compliance with data protection regulations. The principles of consent, data minimization and use of data for legitimate business use, must be always at play. Furthermore, taking into consideration cognitive capabilities of people with dementia, consent capture must be kept simple and easy to understand during onboarding, so users do not have to deal with a complex set of questions. Most of the times, caregivers (typically family members) act as proxies for decisions that impact the person with dementia. Health apps should recognize and support such needs when managing data belonging to a person with dementia.
Data sharing with third party apps must also be with a user's full knowledge and consent. At any given time, customers should have the option to ask for all information pertaining to them processed by the app (allowing them to exercise their Data Subject Access right).
If a customer decides to delete the app, the app should also part with the customer’s personally identifiable information in full compliance with local regulations. Any other data retained at that point should be converted to non-identifiable data (ensuring that any sensitive personal information is no longer retained).
Any use of customer data for data science applications must be done with the primary objective of finding opportunities to alleviate the burden of dementia care management. Data science models should be trained on aggregate and anonymized data, thus removing any identifiable data to avoid potential biases due to faulty assumptions. This allows customers to trust the app while still benefitting from the predictive and preventive capabilities afforded by applications of data science.
In summary, any digital proposition for dementia care should be anchored on the principles of Care, Support & Trust.