IoT poses ethical dilemma for carers of vulnerable people

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.

Wellbeing Indicators for Later Life

The first indicator of declining wellbeing is the ability to cut your own toenails. That’s a conclusion of ongoing research in the Newcastle University Institute of Ageing. They identified fifteen key indicators as people’s capability reduces in the last ten years of independent living. Two scenarios are shown on the chart below.

Kemuri Zone: between curves of reducing capability

The left hand side is a typical steady decline over seven years. The right hand side is an optimally managed reduction of activities of daily living. Perceived wellbeing is higher for six years before an inevitable decline and the need for professional domiciliary or residential care services.

Quarkside was surprised that maintaining the ability to walk 400 yards for six years could increase independence by almost three years. Furthermore, the period of reduced capability is shorted, resulting in lower costs for end-of-life care.

This research is being embedded into the Kemuri Wellbeing Monitor software. People should consider installing a KemuriSense Smart Power Socket into the kitchens of people living alone when they cannot walk 400 yards and having difficulty with heavy housework and washing clothes. Families can expect to gain peace of mind for three to five years using the Kemuri service – when they are in the Kemuri Zone between the curves of reducing capability.

Value of Predictive Analytics: Kemuri

A report “Challenging Innovators: Matching offerings to the needs of older adults” has a diagram to locate Kemuri in a quadrant:

Value of Predictive Analytics

Kemuri is high value and high function with predictive analysis, pattern detection and motion.  Fall detection is indirect, but better than nothing.

There’s lots more to digest in the publication by Laurie M. Orlov, Boomer Health Tech Watch

 

Kemuri: The Disaster Movie

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.

UPDATE: 22/4/14

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?

 

 

Crowdfunding: Hosted by SOCITM

Kemuri is a start-up with ambitions to build a social enterprise that is co-designed and co-produced by Councils with Social Services Responsibility (CSSRs). It needs a national infrastructure for safely and securely storing personal data of vulnerable people living alone. The infrastructure would allow families to co-operate with care agencies by checking wellbeing on a daily basis by unobtrusive predictions of hourly activity.

Steve Halliday prompted this posting from his blog.  ” …  how about if each of 500 local organisations contributed £1,000? That would raise enough to recruit some useful people for each of the regions. I was delighted when the organisations I suggested the idea to said “Yes, let’s try that”. The IT and digital leaders society (Socitm) and then the Local Chief Information Officer Council (LCIOC) both gave it their support and many individual organisations have indicated they would contribute. So, we have just launched a local public service Crowdfunding initiative, hosted by Socitm.”

Rather than relying on the goodwill of the private sector suppliers the lowest cost provision for Kemuri would be by using a shared service open to all CSSRs and certified care agencies. Kent Connects has helped already by awarding a prize of £2000 to get a successful demonstrator of a product that predicts the risk of hypothermia, dehydration and immobility of vulnerable people living alone.

If 100 other CSSRs chipped in the same amount, then there would be no difficulty in securing the remaining funding for pilots and national roll-out. The benefits of daily identification of risk could prevent many emergency admissions to A&E, distress related to falls and even deaths of people lying unattended, unable to call for help. Crowdfunding by public sector bodies is ideal for social enterprises whose main purpose is community good, not pursuit of untaxed profits.

Kemuri: Benefits First

Kemuri Can Save Lives.  That bold statement was not contradicted by last night’s sell out audience at the IoT Meetup in Shoreditch.  It was the first presentation open to the public. The organiser asked for a non-techie talk, and got one – apart from the fact that everybody there would know that IoT is the “Internet of Things”.

Grannies living alone were the star turn.  As they grow older, the risk of hypothermia, dehydration and immobility increases.  After a fall or a stroke, they can lie on the floor unattended for hours or days.  In the worst cases they are discovered dead.

The first putative customer gave the benefits case.  She was taken into hospital on Sunday night.  ‘If I had installed the Kemuri kit, I would have seen that her heater was broken on the Monday before, had it mended, saved enormous distress and the saved the State the high cost of an emergency’.  He drew the chart in the slide pack.  He can have the first off the production line.

All the techie stuff was missed out, leaving time for plugging Adrian McEwen’s book, simplicity, design and teamwork.

Care Bill: LAs should prepare now

The Care Bill will need massive ICT change within Local Authorities (LAs) by 2016.  The Department of Health (DH) have issued, for discussion, a guidance note on social care information and technology (DH Care Bill Guidance).  Priority actions are:

1. Roadmap: Plan with suppliers to satisfy a new charging regime by 2015.  Back office systems will need updating.  LAs will also have to provide information and advice to citizens – especially signposting citizens to care services.
2. Self-Funders:  Consider on-line assessment for self‐funders within wider changes in information and systems.
3. Better Care Fund:  Use the NHS Number as the primary identifier to comply with Integrated Digital Care Records Guidance.  There is capital fund open to NHS providers applying for resources to support the development of Integrated Digital Care Records, including with adult social care.  The second round will open shortly and LAs are strongly encouraged to work with NHS providers to make a compelling proposal.
4. Open APIs:   Think about embracing open APIs when procuring, renewing or refreshing its IT systems.
5. Technology Enablement:  Work with DH and national partners, to develop technology that drives improved outcomes, citizen experience and efficiency.

LAs should take this opportunity to consider joining forces to support a social enterprise that provides a national infrastructure with Open APIs into citizen controlled Personal Data Stores, keyed on the NHS number.  Co-production is the best opportunity in decades to provide interoperability between health and social care records, including self-funders recording expenditure against their Personal Care Budgets.  A social enterprise, such as Kemuri, could provide such an infrastructure, with suitable funding.

Funding a Social Enterprise

Ideas are free.  Concepts are beguiling and an excuse for inaction.  Improving the wellbeing of an ageing population seems to be a noble social enterprise.  People don’t want intrusive monitoring – but digital technology can help.  Kemuri has taken the first steps in providing a passive wellbeing monitoring service that will cost less than £1000 in the first year and less than £500 in subsequent years.  One year in a residential care home costs at least 10 times this amount, or more likely, 20 or 30 times.

The technology for Kemuri’s simple well-being monitor uses the Internet of Things.  It may be a buzz word, but when Google invests £2 billion on such products, it is not just hype.  Adrian McEwan’s book on the Designing the Internet of Things has helped to identify the action needed for a start up.  The chapter on a Business Model Canvas provides a nine point process for showing what must come next. The benefits are clear, the costs are containable, so how can funds be raised to deliver at scale by 2016, when the impact of the Care Bill becomes clear to the general public?

The proposition is that funding should be forthcoming if there are sufficient provisional orders.  Provisional orders would be financially risk-free for care commissioners.  If the products and services do not meet pre-determined conditions, then the order need not be fulfilled.  The financial risk is taken by the funders.  The big question is the size of the market at the price point selected.

In the UK, here are approximately 2.5 million people aged over 75 living alone in own homes, sheltered housing or care homes.  Any one of these is a potential beneficiary of passive wellbeing monitoring.  2,500 provisional orders would be just 0.1% of the potential market.  2,500 provisional orders represents a turnover of £2.5 million.   Is this attractive to Angel funders or Venture Capitalists?  Time will tell.