Newcastle University, Institute for Ageing, have questioned the ethics of monitoring older people living alone with mundane household appliances, such as kettles. The Internet of Things (IoT) now has the capacity to place sensors unobtrusively and collect data continuously, generating concerns about “informed consent”. Four were identified:
- Smartphones passively monitor activities and send alert to families or carers in public spaces outside the control of the observed person;
- Potential stigmatisation of the observed person;
- Greater liability to the carer who has constant availability of data;
- Reduced face-to-face or telephone communication.
However, they urge caution to avoid over-emphasising potential harms compared to the likelihood of improved outcomes.
Innovate UK funded the study, which also included a focus group report of the Kemuri® Wellbeing Monitor. This is an IoT smart power socket that senses temperature, motion, and power used by kettles and microwaves in kitchens. Web software learns patterns of behaviour and checks for changes from normal behaviour every hour. The objective is to reduce NHS and Social Care costs by families identifying the risk of hypothermia, dehydration, malnutrition and unattended falls.
The focus group from VOICENorth were all carers of older people who had symptoms of dementia. The findings included:
- “… an overwhelmingly positive response that the three types of information was the most appropriate to support carers to provide reassurance that all was well”;
- “Most felt the kitchen was a place where ordinary day-to-day activities happen”;
- “… there was unanimity that the device was user-friendly in terms of the user interface (screen, readability, and instructions)”.
The full report, “Ethics of passive wellbeing monitoring and focus group report“, is available to download.
There’s a consultation about the regulations for protecting personally identifiable data. The government proposes allowing a number of local organisations to create secure Accredited Safe Havens (ASHs). They will have access to information from peoples’ personal care records, which could be used to identify an individual.
The consultation assumes a solution that there is a need to transfer such data into an ASH. Quarkside suggest that an alternative is inherently safer. Instead of moving data to an ASH, it stays put in a Personal Data Store (PDS). A PDS resolves the problems of consent by only releasing data for analysis without personally identifiable data. This could be controlled by Mydex.
The back of a beer mat design goes something like this:
- People control their own health and care records in a suitably encrypted data store.
- Data is held in 5* format in triple stores and using URIs appropriately (ask Sir Nigel Shadbolt how to do it).
- Explicit consent has to be given for the extraction (or viewing) of any attribute. This avoids any data which could lead to identification being stopped at source. The consent could also be given by an Accredited Data Attorney (ADA). An ADA could be the person or any single person who has been trusted to give consent to release data for sharing purposes.
- If an Accredited Data Processor (ADP) wishes to use anonymised data then temporary rights are given by the ADA. Data may be given an expiry period after which any copies of the source data are destroyed. The ADP would be allowed to stored summarised data for analytical purposes.
- Any joins of personal data are done within the domain of the PDS and the method of performing those joins and hidden from the ADP. The risks are reduced for loss of privacy. If you go back to the principles of FAME you will see the nine principles that can make this work. The Identity Management problem is solved at source. Sharing data from multiple agencies is logically performed in an infrastructure that is like a walled garden.
- Each time data is released to an ADP, then the source identity would be irreversibly hashed by the ADA. The regulations would be so much simpler to implement.
- The ADA can release personally identifiable data to multiple agencies, such as health and social care. Again this must be time limited and the agencies would be obliged to destroy data, without any rights to store archives that contain personally identifiable data. A PDS is the repository for health and social care records.
Big data technology has advanced to the stage where this has become possible. Give control of sharing to the citizen. Acknowledge that people have ownership rights to their data, even if it is collected and stored by the NHS (or any other ADP). If you don’t create ASHs, you don’t need to regulate them
Tunstall, is possibly the largest supplier of telecare services to UK Social Services. The newsletter of “Telehealth and Telecare Aware” tells us of rising debt and “an air of turmoil and uncertainty”. This is not good news at a time when the proportion of older people is rising. Companies in financial stress often draw in their horns and cease to innovate. The opportunities of the Internet of Things and predictive monitoring should not be missed. New technology can save or destroy businesses – just look at Kodak and Nokia.
There is no reduction in demand for Telecare, we may be observing a supertanker unable to change direction quickly.
Universal Credit IT is getting nowhere, expensively. At least that seems in line with the opinions of the Parliamentary Work and Pensions Committee.
“Despite the millions being spent on the end-state IT solution it is still not clear when the system will be ready or even how it will work. It is still not ready for testing on the first 100 claimants, and we have no indication of when it will be possible to test it on a bigger and more representative group of claimants.”
It it 3 years since Quarkside prophesised doom. It hasn’t quite reached that point, but how close to doom is it? The Committee Chair said:
“The money wasted on Universal Credit so far – £40 million on IT software that now has no use and £90 million on software with a useful life of only 5 years – is a matter of deep regret.”
Perhaps the Grim Reaper should dust his (or her) spectacles and deal a death blow before the tax payers’ regrets increase.
Fire, Police, Ambulance, Army and any emergency service can get a real-time movie map of a disaster area. Remember the floods of 2014. Who knew what was happening where? Were local communities upset when the emergency seemed slow to respond? This isn’t a complaint, it is an offer to help.
After a National infrastructure of Kemuri sensors are installed in the homes of vulnerable people living alone, the data could be used to show a minute by minute map of power outage, humidity, temperature and movement. It would not need any public or emergency service input. A moving picture would make good TV, too. We could imagine the speed and spread of a flood as power fails, humidity rises, temperature falls and people are moving around their kitchens at 3am.
As an example of how it might look, here is a video of minute by minute activity in an area the size of the Isle of Wight. A day’s data in 30 seconds http://www.youtube.com/watch?v=CDB5Nt-3h_8. It is big data in action. Kemuri plans to use this technology.
The Kemuri infrastructure could provide information to a COBRA committee. The network, given sufficient resilience, could become part of the Critical National Infrastructure. The beauty is that the sensors will already deployed for a different function for families and carers; the emergency services may choose to add sensors at key locations and pay £400 per year for the privilege.
All Kemuri needs is some funding to kick-start the development of production quality sensors and shared national infrastructure.
Kemuri entered a hackathon “to develop prototypes that can support communities to be resilient to and adapt to environmental crises and change.” with £5000 first prize. The event was cancelled; apparently there weren’t enough competitors. Are we that short of innovators in the UK?