Professor Ann Blandford, Professor of Human-Computer Interaction, UCL – Supplementary written evidence (INQ0086)
Technologies and related services already available to monitor the health of older people
There are many technologies available for all, regardless of age – most obviously apps on smart phones and wearable devices for monitoring activities of daily living such as exercise, heartrate, consumption of food and fluids, sleep patterns and similar, and vital signs such as blood pressure, weight, blood glucose levels etc. Focusing particularly on older people, other obvious categories include fall detection, location monitoring, home activity monitors, medication monitors, and more specialised devices for specific clinical conditions. Many of these are designed for use in the home, and assume monitoring is done by a family member.
Their value depends a lot on factors such as the physical and cognitive abilities of the individual and their social circumstances – e.g., whether they are living alone or with others, engagement of their local community, relationship with family… Also on whether people acknowledge their changing needs and are prepared to accept help of various kinds, and their views on privacy, including data privacy.
Value to the health and care system: what most of us aspire to is living independently and well – caring for others, feeling cared about and cared for, not lonely, but not intruded on – and achieving that will enable people to contribute meaningfully to society while also reducing demands on the health and social care systems.
Uptake is variable, and studies of use identify many barriers to use. There are probably more devices and apps obtained then abandoned than there are being used. Barriers to use include:
Based on my personal experience there is limited capability and little coordination. Many care organisations do not have the expertise or capacity to deploy and exploit technologies in a well informed way. There is a huge need for integration and coordination – across public and private providers, across health and social care, and between the individual, family members and care providers. To date, we haven’t even managed to deliver integrated care records across primary and secondary care providers, or even between one secondary care provider and another, but we also need to be investing effort and resources into integrating records across public and private care providers with lay carers and individuals.
New technologies being developed for monitoring health, that could be deployed in older people’s homes
We should be asking what new technologies are needed, and could provide value, for deployment into older people’s homes. Imagine yourself as you get older. What technologies are you going to want or need? Is it a fridge that monitors what you are eating or a walking stick that sends you step count to your children? Or is it a video wall that enables you to easily chat with your great-grandchildren and watch them play, or to play a remote game of whist with old friends? Or an exercise bike that enables you to navigate a wild terrain from the warmth of your home, using your remaining abilities?
The first R&D should be on what types of devices and systems are valued by the older people that are the focus of this. Huge amounts have been invested already in technologies that address imagined needs but not the real values of older members of society. What do they want? There isn’t a single answer to this question, but for most people it will include feeling that they have a purpose in life, feeling connected to friends and family, being able to do the things that matter to them (even vicariously), feeling loved and valued. If we get these things right then hopefully we can piggy-back important health monitoring and interventions (which most people don’t care about so much except when things go wrong) on the back of them.
There is also a need to better understand what makes people trust systems, how they can manage data privacy, and how to ensure that trust is honoured.
There are many challenges, of which the first I would highlight is getting the engagement of the very diverse target community. Deployment needs to look beyond the home into the community. It also needs to understand the diverse “users”, which will include individuals, various health and social care providers, family, neighbours, pharmacists, maybe charities, etc.
There are also challenges around respect for the individual and data privacy.
New technologies being developed for monitoring of health and for automated treatments, such as wearable or implantable devices
An obvious example is the “artificial pancreas” (see also the Nightscout project) for managing type 1 diabetes. This closed loop technology involving continuous glucose monitoring and is close to the point where that is linked to automated administration of insulin.
For monitoring, another area is the development of Artificial Intelligence (AI) algorithms that can distinguish between “normal” measurements and ones that indicate a problem that needs addressing. This is an area in which the UK is leading, though there is currently a lot of debate on how to validate and regulate AI-based systems. The area in which the greatest advances have already been achieved is in the analysis of images (e.g., in MRI, OCT and other scans).
There is “low hanging fruit” in making some widely used technologies easier to use and more effective and cost effective. We should better understand the values and aspirations of people as they age and prioritise technologies that contribute to greater quality of life, which is likely to be activities that improve people’s enjoyment of life at least as much as helping them manage medical conditions.
There are important but non-obvious developments in R&D that could make important differences – for example, developments in miniaturisation and longevity (time between charges) of batteries could make new kinds of wearable, implantable and portable devices more practical for long-term use.
It is also important to review the health and social care systems within which technologies are located, bringing together R&D in STEM with the social, behavioural and organisational research that is needed to make that technology work in practice.
The biggest challenges are not simply technological, but relate to behavioural and social factors that determine how technologies are adopted and used. We must be mindful of reducing rather than exacerbating inequalities in society, and of protecting the interests of citizens, particularly the most vulnerable.
There are already problems of mis-selling and of unscrupulous “support engineers” calling vulnerable people and persuading them to hand over money or enabling access to hack their computers; as people become more reliant on data-enabled technologies, the scope for mis-use (e.g., cybersecurity threats linked to health data) will grow, and needs to be managed responsibly.
The extent to which health data recorded by monitoring devices is used to provide individual advice or guidance
To date, little use has been made of such data. Issues include professionals trusting its accuracy, individuals being willing to gather or share such data, and the challenges of providing automated advice / guidance which turns a device from data gathering into a medical device with all the regulatory requirements that come with that. Practices in managing type 1 diabetes are more advanced than those in most other conditions.
It takes a long time – years – to gather definitive evidence of the effectiveness of personalised guidance. There are a lot of confounding variables that make it difficult to do clear credit assignment.
In my experience, most epidemiologists still rely on data from validated healthcare sources such as CPRD. That is now changing, with platforms such as RADAR base from King’s College London, which automate the process of analysis from wearables (and similar) data.
Ethical and privacy considerations that need to be taken into account with regards to technologies for health monitoring
There’s some real double-think around health data, which is being treated as highly confidential – sometimes to the detriment of the individual – up until the point when the individual no longer has cognitive capacity to manage their own data, at which point others need to be entrusted with access and stewardship. We need a much more mature public discourse around who has access to what data, for what purposes and with what safeguards, and how such access rights might evolve over time.
Much better and clearer regulations and standards than are currently in place are needed. We also need to consider the sustainable economics of different models. Companies such as fitbit and google can provide services “free” because they have means of monetising data so they don’t need to charge consumers. If data is better safeguarded then we need to rethink the economic models around data gathering and access / use.
The extent to which the aim of the Industrial Strategy's Healthy Ageing Grand Challenge is realistic
I suspect that target isn’t realistic because people’s lifecourses are determined more than 15 years ahead. But it’s really valuable to have a target to work towards. Given that the average life expectancy in the UK is currently around 80 years, but that up to 20 of those years may be spent managing poor health, we’re looking at people aged 45-65 already and seeking five more years of good health. You might say that we’re not looking to prolong life overall, but to make more of it high quality. That means tackling the determinants of poor health, but while some of those are clearly linked to lifestyle factors such as diet and exercise (and smoking / drinking / stress), other are less clearly so. For dementia, the strongest risk factor is getting older!
I’m not involved in developing technologies specifically for older users, but am involved in developing technologies for health behaviour change and for managing various clinical conditions, without a specific regard for age. However, my work is mostly research rather than commercial practice.
Some of it is about rethinking what is “normal” as we age and encouraging greater aspirations. That it’s common to be running at 70 or doing Zumba at 80 or cycling at 90. These things are happening all over the country and they are unremarkable. Local authorities have a role in facilitating these.
Other priorities include reducing loneliness and finding ways for people to continue to have a purpose in life even as physical or cognitive capacity diminish. This could be facilitated through advanced (but easy-to-use) technologies for connecting people and empowering them to do the things that matter to them.
While there is value in benign monitoring and treatment, the focus should be on improving quality of life, treating people as people, finding out what really matters to them and supporting that. A lot of current effort seems to be regarding older people as “other”, as different, as needing care rather than needing joy and pleasure and fun and comfort and companionship. The Government’s strategy will achieve much more if it takes a more positive view of health in older age.
Whether technologies and services can help to reduce health inequalities, or can increase them
There is indeed a risk of widening inequalities unless we really focus on managing them – on developing technologies and interventions that are cost effective as well as effective, that address different life circumstances and values and beliefs. It will be important to ensure that health and social care delivery infrastructure is inclusive of all, and addresses the needs of all members of society.
9 February 2020