The trade-off between privacy and peace-of-mind in caring for older adults
02 September 2019 | 0 Comment
Privacy has become a major issue in the era of big data. But what is the trade-off between privacy and the benefits of peace-of-mind in the care of older adults?
Before the internet connected us all and companies lured us into providing information about ourselves, either explicitly or by subterfuge, the world was a simpler place.
But not a simple place.
Even before the internet, your home was subject to statutory rights of entry from a long list of entities. This ranged from the police, fire service, tax and customs officers, utility providers (telephone, gas, water, electricity, TV licensing) to landlords, bailiffs, and assorted others. And numerous bodies knew a great deal about you. Particularly the health services – but it was on paper, or in electronic systems with no remote access.
Controlling our data
We have given these entities these powers, or rather we tolerate these entities having these powers because they are (in theory at least) keeping us well and protecting us. This could be from criminals, dangers such as gas leaks, and the costs to honest citizens of those that are defrauding tax, customs, utility providers etc. And for most people that “knock at the door” is a theoretical event. And if it happens, well you will know that it has happened and you can stand and watch the agent as they search your house, check your electricity meter or TV set.
But in the digital age these intrusions are mostly invisible, and what they find out, and what they do with that information, is not obvious, and that’s a concern.
So, you’re an older person living alone: what’s the appropriate amount of digital access to your world? We might all be grateful for a son or daughter popping around to peek in the window to check we’re ok. Are we just as happy to have them do so digitally by activating a remote camera in our home? Maybe that’s ok if our children do it, but is it also ok if a neighbour can do it, or if social services can do it?
What about simply knowing what time you get up in the morning, or go to bed? How often you go to the toilet? Personally, I care very little whether people know how often I visit the loo and how long I spend there – in a working office it’s kind of obvious to anyone who cares to pay attention, but in some companies today this kind of information is being used by HR to monitor productivity. In the home of the elderly person the frequency of micturition may be an important indicator of UTI, or poor hydration. And that enables carers to be proactive about addressing those issues – which is obviously a good thing. But that same data might be used to deny health insurance, or to enable a landlord to decide that someone was too infirm to remain as a tenant.
These are the kinds of questions that AgeTech is raising in elder care and people are expressing strong opinions. The most important opinions are of course those of the elderly themselves. I’ve become a little tired of hearing people tell me that “no way will an older person tolerate having a camera in their home”, when I know from numerous conversations and trials with older adults that they will mostly welcome it provided that they have control over how and when it is used and that the benefits to them are clear and significant. And that of course is key.
We all want to age safely and well in our homes; we would probably all like to die peacefully in our own beds after a long and healthy life. But in the later stages of life family need to know that their loved ones are ok, and the health and care services need ways to look after people that minimise the cost and disruption of putting people into short-term or residential care unnecessarily.
Striking the balance
We have to strike the right balance between the privacy of the elderly and letting third parties into their homes “virtually”. We’ve tried to think about this very logically at Kraydel and test our thinking with elderly people and their carers. It will surprise no-one that our research shows that consent to share information of various kinds needs to part of a joint discussion with those elderly people and their family carers whenever possible.
We try to think about things by analogy with the physical world. If you’re an older adult, perhaps a little frail, then your kids probably already have a key to the door. You probably don’t mind them turning up unannounced to say hello.
If you’re receiving domiciliary care visits, then carers may have access to a key in a key safe to let themselves in. And maybe your neighbours, are welcome to come around and peep through the window if they are worried about you.
So, we apply the same logic to the use of the camera in the Kraydel hub. You can configure it so that it’s only on when you make or accept a call (and you’ll know it’s on because of the indicator lights). Or so that selected people e.g. a daughter or son, can activate it remotely to check you’re ok. You can also configure it so that selected people can only activate it remotely if the system has raised an alert because of some change in the home environment e.g. it’s well past your normal bedtime but the lights and TV are still turned on.
What about all the sensor data from the hub (motion, light, sound, use of TV remote control) which we use to try to gain insight into your normal healthy routines? Well you probably already happily tell your family, friends and care visitors what time you normally get up and go to bed, what your favourite TV programmes are. So, sharing that information digitally is probably ok provided you know who can see it. And it’s only those people you want to share with – people who you would want to take action if you seemed not to have got up in the morning, or not to be in front of the TV when your favourite TV show was on.
Lastly what about medical data? The Kraydel hub can pair with devices such as weighing scales, blood pressure cuffs, pulse oximeters, clinical thermometers. You may not want your children to know that you’ve gained (or lost) some weight, or that your blood pressure is up. Partly because they might nag you about it, so it will be up to you whether that data is available to them. But you’re probably ok to share that information with a nurse or clinician. Particularly if it spares you from a difficult trip to a surgery or hospital for a check-up.
In the end it comes down to a few simple principles:
- Granularity of access to the older adult and their data. They need to feel in control and understand what they’ve consented to, and what they get in return.
- Transparency about the access and use of that data. Knowing when the system is being accessed, by whom and what they’re doing with the information.
- Clear benefits to the elderly person from consenting to the access.
At Kraydel we knew we weren’t about creating a surveillance device to enable family to ignore granny unless there seemed to be a problem. We’re about giving family members peace-of-mind for sure, but the person into whose home the devices is deployed has to be thrilled by what it gives them: video calling with their grandchildren, reminders about the little things that are starting to slip their minds, and the knowledge that if something goes wrong, someone who cares, will know.