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.

Kemuri: Cisco Grand Challenge Entry

Kemuri wants more people to share this vision:

People living longer, happier and healthier

in their own homes

with non-intrusive social support

from family, friends and carers

Kemuri products and services will help towards achieving it for more families of vulnerable people living alone.  Kemuri has entered a competition, “Cisco Internet of Things Innovation Grand Challenge”. The winner will receive a prize worth US$200,000. Winning would boost the ability to scale quickly to a service for thousands of families with older people living alone. A place in the semi-finals is guaranteed if the entry “Social care costs reduced with IoT sensors and predictive monitoring” is “liked” by the most number of people. To make sure that people are genuinely interested, Cisco require people to register on the Innovation web site.

The publicity for being top of the poll would be useful, even if it does not lead to winning the top prize.  Spreading the link would help to gather a few more votes for a worthwhile social enterprise that could have an impact on every family that is concerned about the wellbeing of vulnerable people living alone.

Ageing: Put the Social back into Care

At last, some recognition from people who understand the need to put the Social back into Care.  The “SmokingChimney” prototype won a £2000 prize for the Kent Connects challenge “How can we make it easier for people to help each other?”

It was not led by Technology – but a real life story from one of the attendees who joined the team.  He was so impressed that he wants the first version off the production line.  He created the strapline and enthusiastically gave the winning presentation.  It is an example of how designers should listen to people who want something very simple – the refinements can wait.

Have a look at the SmokingChimney slide pack to see the simplicity of the prototype.

Ageing Better: The message is getting through

Via the Public Service Launchpad, Quarkside has identified a blog promoting the understanding of the social issues surrounding our ageing population.  Claire Ritchie is worth following if you are interested.

Ageing: What do People Need?

Ageing impacts everybody in civil society.  We all grow older; we observe the ageing process with mild disinterest until it affects us personally. Who are the key stakeholders in sustaining a reasonable quality of life for our ever increasing ageing population?

• Older people living independently
• Relatives, who may live many miles away
• Carers providing voluntary or commercial services
• Local Authority Social Services officers
• Voluntary Sector advisors

At the Health Technology Forum (November 20th, 2013), Mike Clark informed us that there are 1.5 million people employed in the Social Care industry.  In addition, there are about 5 million more providing unpaid care to relatives, friends or via voluntary work.  Before may years have passed, more then 9 million of the UK population will be personally involved in providing social care.   It is beginning to have a major impact on UK productivity with so much time and effort being deployed in caring. Technology enables people to do more, with less effort, improving outcomes in health and wellbeing.

Before rushing into a care technology solution, Quarkside recommends taking stock of what each stakeholder group needs, with answers to simple questions for each group:

• What are the benefits of monitoring activity in the home?
• What are the risks?
• How much activity should be monitored and stored, if any?
• How much data should be shared, and with whom?
• What are the critical privacy requirements?
• What is affordable?

These questions are being posed at Kent County Council (November 23rd, 2013).  The results should should inform any care ecosystem design for the technology products that will largely have to be self-funded.  The State will not provide for things that only provide peace of mind and improved levels of wellbeing of older people and their relatives.

Ageing: Digital Half-Life Policy

Digital technology will impact everybody in the second half of their lives.  The age from 50 to 100, for the vast majority of people, will be a decline of most faculties until death do them claim.  Now is the time to think of the technology implications and develop a policy for public debate.

Here’s a table that shows the decreasing personal digital needs of people over 50 and the increasing needs of their family, friends and service agencies.  There’s an shift from being active and independent to moribund and entirely dependent and others. There a wide range of intermediate states of health and vigour, and digital needs should be individually tailored for the best outcomes.

Digital half life – Needs

The active, social person with no major health problems has lots of choice with the faculties to manage digital technology with ease.  For many this can last into their nineties.  However, the vast majority steadily need more external support. They wish to live independently, and this becomes easier and more economical if they accept external monitoring services. Currently these are expensive, using old technology in the home.  There are gaps in the market for home monitoring services – some idea is given in the table below:

Digital half life – Gaps

The Internet of Things will lead the revolution.  Low cost home networked sensors are critical to the way forward.  It also needs good communications to data centres and analytical software as part of an affordable infrastructure.  Automatic sensing of changes to normal behaviour are necessary, in addition to the commonplace detector alarms.  With intelligent investment, the UK could develop a World leading technology industry.

Ageing: House of Lords should know

A recent report from the House of Lords Committee on Public Service and Demographic Change warns that the Government and our society are woefully underprepared for ageing.  During 2020–2030 they expect:

•  51% more people aged 65 and over in England in 2030 compared to 2010
•  101% more people aged 85 and over in England in 2030 compared to 2010
•  10.7 million people in Great Britain can currently expect inadequate retirement incomes
•  over 50% more people with three or more long-term conditions in England by 2018 compared to 2008
•  over 80% more people aged 65 and over with dementia (moderate or severe cognitive impairment) in England and Wales by 2030 compared to 2010.

Among their many recommendations, these stand out as a message to everybody, before they, and their families, are too old to benefit.  People need to:

• be more focused on prevention, early diagnosis, intervention, and managing long-term conditions to prevent degeneration, with much less use of acute hospitals
• be centred on the individual person, with patients engaged in decisions about their care and supported to manage their own conditions in their own homes so that they can be prevented from deteriorating
• have the home as the hub of care and support, including emotional, psychological and practical support for patients and caregivers
• ensure older people only go into hospitals or care homes if essential, although they must have access to good specialist and diagnostic facilities to ensure early interventions for reversible conditions and prevent decline into chronic ill health.

Technology has a part to play – small in terms of overall costs – but a critical part of the Ageing Infrastructure.  Today, this is inadequate, fragmented and and inflexible.  This provides great opportunity for UK technology and the TSB is investing, such as the DALLAS programme. Innovation is key.

Another source of innovative ideas is coming from social media culture; informal meetings of people with ideas and energy.  Have a look at the Meetup network.  The Internet of Things has a very active group and Health 2.0 is looking at Dementia this week (there are spaces).