Extraordinary times

Two weeks ago (Monday 9th March), I stood at the front of a class and said "In the unlikely event that UCL closes before the end of term..." and within a week all face-to-face teaching had been cancelled. Such is the experience of exponential change. I know I'm not alone in realising that views I held a matter of days ago were untenable. I am guessing that this process of revising beliefs and attitudes isn't over yet.

The last day I was in the office was just two days after that wildly incorrect assessment. I'd planned to work at home the end of that week anyway. Since I work at home quite often I was already set up for most things, but there were a few items I hadn't brought home. The most critical turned out to be my interoperable collection of "so 1990s" Filofaxes. I ordered one. I've lost continuity in my note taking, but by asking all my team to remind me what we'd agreed in our previous meetings I'm catching up quickly. Home delivery worked brilliantly too.

Improvised desks are sprouting up in our house, such as a standing desk made up of an old bookshelf with a small "laptop desk" which is located right next to the wifi router for use during the more critical online meetings.

I had to do a rapid rethink on all my teaching: lectures got recorded ahead of time so that I wasn't totally reliant on our home broadband at the critical time (that worked easily once I'd mastered the uploading software for the virtual learning environment). Class quizzes worked well remotely. Class discussion with over 30 students was challenging. When I had a smaller class a few days later, I mercilessly brought each student into the discussion, keeping a list of who had contributed and who hadn't yet. Not as good as face-to-face, but not bad either.

This coming week, I'd have liked to do a discussion exercise with digital postits in class. I considered several alternative tools for this; some required too much set-up for a single session; some work better asynchronously than in real time; I've ended up just sharing an online document that all students can contribute to, and we'll see whether we can build a discussion around that. It's all a bit of an adventure.

Many of our MSc students are having to rethink their projects for this summer because we have to assume they won't be able to travel or to do any collocated data collection. That's yet another challenge. But at least we can all access library resources from our homes because of all the work that has been done to make them remotely accessible.

I seem to be spending most working hours in online meetings. Many of these work as well as traditional meetings. More importantly, we're using the same videoconferencing technologies for social events: for sitting around in the evenings with friends and family – not just one-to-one like phone calls, but collecting in groups, socially close while physically distant.

None of this would have been possible, even a few years ago. Even if the foundations of the Internet were established in the 1960s and the early World Wide Web around 1990, the tools that we're now using on top of these structures have all been developed within the past few years. And they are getting easier to use and to fit into our lives very rapidly.

If SARS-COV2 had emerged three years ago, I don't know how we would have dealt with ageing parents who believed that they could live independently but actually needed a lot of support (to which they were unrelentingly hostile). Since then, my father has died and my mother is now in a care home, living with advanced dementia. I wouldn't want to visit (even if permitted) for fear of passing on COVID-19 to the wonderful residents or staff. So last week we tried using FaceTime to chat (with support from Jo the manager). I wasn't hopeful that Mum would engage at all, but she seemed to recognise me (at least as a close female relative, if not necessarily as her daughter). We had a good few minutes' surreal chat interspersed with Mum singing then, as I made to say goodbye, she leant forward and kissed the phone. It was strange, and yet poignantly lovely to have this kind of connection when we can't be together. Even if both the phone and Mum's lips then needed a clean!

On Friday, we had a take-away. It seems important to support our local restaurants as they are forced to close and take-aways are the only option. I wonder whether it will continue to be a safe option at all in the coming weeks.

Schools closed on Friday (20th March), which is going to add to the stresses of our children continuing to work while also home schooling. Family have been recruited as remote teachers. Granny will be doing reading and writing; Grandad is starting with some "horrible history"; Auntie will be teaching French; and I'm concocting some science lessons. If we thought remote teaching of students was challenging, remote teaching of small boys ia likely to be substantially more so, but at least it will mean regular contact, and we'll all learn something new in the process.

There are also lots of online classes sprouting up: I'm looking forward to yoga and zumba this week even if they will require us to reorganise furniture even more (in addition to the improvised desks) to make space to move.

We know we are really lucky: we can work fairly effectively from home and we have a garden for fresh air. Mum is safe and well looked after; the rest of the family are all well so far, even if the youngsters are restless. We are aware that many other people have much greater challenges and stresses and grief to deal with. I am truly grateful to all key workers: in healthcare and in keeping essential services (including food, medication and internet provision!) available.

Footnote: Week 2 was still a period of adjustment...

"When I get older..."

The topic of "healthy ageing" is seen a very important. For example, in the UK, there is a challenge of "5 extra healthy years by 2035". It's not clear how that will be measured, or indeed whether it means 5 extra years of life (that will be healthy ones) or targeting improved health within the current lifespan.

At UCL, we had a panel discussion on this theme at the 2019 annual symposium, and the House of Lords Science & Technology Committee is currently conducting an Inquiry into Ageing: Science, Technology and Healthy Living. I had the interesting experience of appearing before this committee last week. The discussion was wide-ranging, but inevitably didn't cover all the themes that are important: it's a huge topic!

Here are a few themes we didn't talk about that I think are important in this discourse:

• Expectations of ageing. There isn't a single experience of ageing. Yes, there can be challenges, such as cognitive impairments (e.g., dementia) and managing multiple morbidities, but this isn't a universal experience. For example, Angela Soper and Ivor McCourt are both climbing at a high standard in their 70s, and many people have great fun as they age, whether it involves demanding physical activity or not.
• Wisdom has a value that complements the qualities of younger generations, and most people have valuable things to contribute to society, provided that structures are in place to empower people to contribute in whatever ways they can.
• There isn't a single date on which we become "old", and good design should be accessible to most people regardless of their age. Indeed, people are likely to find a technology useful in older age if (a) it doesn't carry a stigmatising label of being "for older people", and (b) it is something that they have found useful for some time (and are familiar with).
• Theories such as Self Determination Theory highlight the importance of experiences such as autonomy, competence and relatedness in contributing to quality of life. Autonomy and competence can be promoted or diminished through technology design and the infrastructure that surrounds it. For example, local government services that can only be accessed digitally without providing support for people with limited digital skills are disempowering. Conversely, technology that is easy to use and that gives people access to services they might not be able to access otherwise is empowering.
• Loneliness is one of the most important factors in poor quality of life and cognitive decline in older age. This is predicted to be a growing problem in the UK, and loneliness is associated with mild cognitive impairment (MCI) and dementia. Poorly designed technology and infrastructure contribute to loneliness, but there are some great opportunities to design technologies that bring people together and increase people's sense of connectedness.

Designing for people of all generations is just that: designing for people, recognising that everyone has their abilities and their needs. There's a quotation that goes something like: "Growing old isn’t so bad when you consider the alternative." For some people (e.g., in pain or managing dementia), this might not be true, but hopefully appropriate technologies can help to make later stages of life a positive experience for many people. So can cliffs and swings and other "low tech" stuff!

Image by Claudia Peters from Pixabay

Schrodinger's striking academic

Once again, academics find ourselves in dispute with our employers. And yet again, many of us feel very conflicted about this. I am currently making sense of the alternative "possible worlds" in which I live by thinking of myself as Schrodinger's striking academic.

As long as no-one looks too closely, I am striking and not-striking simultaneously.

It depends on when you look as to whether I am striking or not striking.

Unlike the cat, the transition can go both ways.

I am striking because universities need to manage workloads, promote equality, minimise precarity. We are not cogs in a machine to be worked ever harder: we’re at breaking point.

I am not striking because students aren’t items on a production line. I care about their progress.

I am striking because pay and pensions need to keep up to attract the next generation into a demanding career.

I am not striking because my day-to-day work is not visible to my managers. This may be “industrial action”, but academic inputs and outputs are not tightly coupled.

I am striking because it seems that this is the only way to encourage management to listen.

I am not striking because, based on my employer’s standard working week, I had worked my hours for 2019 by 5^th September. I’m not sure what it means for my employer to withhold pay when I’m working for free anyway.

I am striking because I am standing on picket lines, not crossing picket lines… even if I am then doing a full day’s work from a location off campus.

I am not striking because I have deadlines and there isn’t the slack in the system to catch up later. See note on workloads. No-one else will look after my mental health, so it’s up to me.

I know I am not alone, but that doesn't make the ambiguity any easier. Here's hoping for progress soon...

Image by Gerd Altmann from Pixabay

Don't forget!

Our mother has advanced Alzheimer's disease. Our father had vascular dementia. For a long time, we found it difficult to locate resources that helped to understand the diseases, our parents' experiences, or what we (as their children) could do to support them. We found quite a lot of material that was patronising, overly general, or overly technical.

The following are some of the resources that I have found most helpful to date (in no particular order):

• Wendy Mitchell's personal narrative of her experience of early onset Alzheimer's gives an amazing insight into the challenges and strategies that one person established to overcome them.
• There are many variants of dementia, with different causes and patterns of progress. These are well summarised by Dementia Australia.
• Alzheimer's disease is the most common form of dementia. This article in Nature Education gives some insight into the specifics of AD.
• Five "pocket" (i.e., brief!)  films about aspects of Alzheimer's capture the science in neat little chunks.
• The Dementia UK site gives more insight into managing and living with AD. Follow links from there to find out about other kinds of dementia.
• A personal narrative by a child of someone living with dementia emphasises the value of good care homes and their specialist care.
• As someone loses abilities, it's useful to find products that are specifically designed to support (and bring pleasure to) people with dementia, such as Unforgettable.
• In the UK legal aspects of supporting someone with dementia include setting up legal power of attorney while they still have mental capacity to do so, and possibly applying for attendance allowance to help towards the cost of care when it becomes necessary.

Maybe one day I'll link these notes to theory of information seeking, but for now it's just a place to gather some links.

Artificial (Un)Intelligence in healthcare

I've recently read Meredith Broussard's "Artificial Unintelligence". It's a really good read on both the strengths and the limitations of AI technologies. It is so important to talk about both what AI technologies can do and also what they cannot -- whether that is "cannot" because we haven't got to that point yet or "cannot" because there's some inherent limitation in what technology can offer. For example, in healthcare, technology should get better and better at diagnosing clinical conditions based on suitable descriptions of symptoms together with a growing body of relevant data and more advanced algorithms. The descriptions of symptoms are likely to include information in multiple modalities (visual information, verbal descriptions, etc.) while data are likely to include individual data (biomarkers, patient history, genetic data, etc.) and population data (genomic data, epidemiological data, etc.). Together with novel algorithms, these should get better and better at diagnosis. However, it's unlikely that technology is ever going to be able to deal with some of the complex and subtle challenges of healthcare: making people feel cared for (such as giving someone a meaningful hug), creating the social environment in which it's acceptable to talk through the emotional factors around stigmatised health conditions, etc.

At the Babylon Health event on their AI systems and vision in June this year, there was a lot of emphasis on diagnosis and streamlining care pathways, but conspicuously little on addressing the needs of people with complex health conditions or the broader delivery of care. There was, incidentally, an unnerving moment where an illustrative slide included the names of an entire research group from a London university who I happen to know, suggesting a cavalier approach to data acquisition and informed consent. But that's another story. Many concerns have been raised about the "GP at Hand" model of care delivery, including concerns about equality of access to care, the financial model, the validation of the algorithms used, and the poor fit between the speed of change in the NHS and that required for tech entrepreneurs; some of these issues were covered (though without clear resolution) in a recent episode of Horizon on the BBC. Even more recently, Forbes has published an article on some of the limitations of AI in healthcare – in particular, the commercial (and publicity) imperative to move quickly, which is inconsistent with the safety imperative to move carefully and deliberately. There is a particular danger of belief in the potential of a technology turning into blind faith in its readiness for deployment.

One of the other key topics Broussard talks about "technochauvinism" (the belief that technology is always the solution to any problem). We really need to develop a more robust discourse around this. Technology (including tech based around huge datasets and novel AI algorithms) has really exciting potential, but it needs to be understood, validated, tested carefully in practice. And its limitations need to be discussed as well as its strengths. It's so easy to be partisan; it seems to demand more of people to have a balanced and evidenced discourse so that we can introduce innovations that are really effective while finding ways to value and deliver on the aspects of healthcare that technology can't address too.

Palliative care technology (professional interest meets intensely personal experience)

About 10 years ago, when I first started working on infusion devices, I met a medical director who did a lot of work in hospices; he noted that the motors in the syringe drivers in use at that time hummed gently while delivering medication, and that many families hated the constant reminder that this meant that their loved one was on end-of-life care.

Recently, I have experienced this at first-hand, except that the syringe driver being used was mercifully quiet, and did nothing to remind us of its presence. It only really featured when Dad (now very peacefully sleeping) had to be turned to a different position, when the care professionals had to take care not to occlude or dislodge the line. And yet this simple device had huge emotional import: it still, silently, announced that the end of a life was near. It was exactly the ending that we had agreed we would want if possible: peaceful, not disrupted by any invasive or disruptive interventions, with family around. And yet I still found myself wanting to remove the driver because it signified a conscious decision, or determination, that Dad was indeed going to die. Maybe if I removed the driver then Dad would spring back into life. So I find myself with very mixed emotions about the driver: gratitude that it did indeed contribute to a peaceful, pain-free ending combined with distress that it announced and determined the inevitability of that ending.

As a technology professional, I of course also found the device interesting: the nurse who set it up did so with great care, and clearly found it easy to use: it is a task she performs routinely. But the three aspects that we highlight in our paper on "Bags, Batteries and Boxes" all came up in the conversation around the driver. The disposable bag provided was identical to the one featured on the left in Figure 1 of our paper (though all it did was notionally hide the driver which was, in any case, hidden under the sheet). The nurse replaced the battery at the start and after 24 hours to minimise the risk of it running out of charge. The box was locked to prevent tampering (correct) but, bizarrely, when it came to removing the driver after Dad's death, I was the only person in the room who knew where the key was located, which rather undermined its role as protection against tampering. Since no nurse visited after Dad's death and I didn't want him to be moved while still attached to said driver, I asked the doctor to remove the butterfly needle. Clearly, the doctor had never done such a thing before, reinforcing findings from our study of incident reports involving syringe drivers used in private homes that doctors are sometimes put in the position of having to use technology they have no familiarity with. Thankfully, the doctor did kindly remove the line, gently as if removing from a living patient, and we could send Dad off suitably clothed and unencumbered by redundant technology. I can only assume that the driver was returned to the community nurse team later.

I'll close by thanking the amazing staff at Tegfield House, who cared so diligently for both Dad and us and the equally amazing NHS nurses and doctors who cared for Dad over many years, and particularly in his final hours.

Happy 70th birthday (to digital and to the NHS)!

It's been widely publicised that it's the 70th birthday of the NHS on 5th July this year. When preparing to be interviewed for a Telegraph podcast on digital health, I realised that it's also the 70th birthday of the "Manchester Baby", the first stored program computer (21st June). So in a very real sense, the parentage of digital health in the UK was born 70 years ago. There are other relevant birthdays to celebrate too, such as the 60th of the Human Factors Journal (for which usable health technology is an important theme) and the 500th of the Royal College of Physicians.

We've come such a long way in 70 years. Many of the major advances in that time can be attributed to a better understanding of hygiene and antibiotics, and to pharmaceuticals more generally. As advances in pharma are becoming more costly, digitally enabled health and wellbeing are likely to provide greater gains.

The history of analogue medical devices goes back hundreds, or even thousands, of years. For example surgical knives are believed to date from Mesolithic times (8000BC), syringes from the 1500s, and the first stethoscope from 1816.  

There have been transformational developments in digital health technologies from the 1970s onwards. People may find it difficult to remember back to the times when there was no such thing as intensive care (as we now understand it) but it has emerged within our lifetimes: critical care medicine, with its focus on continuous monitoring and intervention, was established in the late 1950s. Imaging is another area that has grown in significance from x-rays – largely since the 1970s, when Computerised Tomography (CT scans) and Magnetic Resonance Imaging (MRI) were introduced. Now computing is fast enough that it is becoming possible to use imaging in real time during surgery, and to introduce interactive 3D images (built up from 2D slices).
 
These are part of another phase of rapid developments which are also being brought about by the availability of consumer devices, including wearables, that are becoming accurate enough to substitute for professional devices. Also, big data; for example, genomics is improving our understanding of the interrelationships between genes and their combined influence on health, while consumer genetic testing kits are making new health-relevant information available to the individual.

As the digital computer and the NHS reach their 70^th birthdays, we are seeing huge advances in the technologies that address relatively simple problems. However, we have made much less progress in the technologies for complex problems. Go into any hospital and look at the complexity of the systems clinicians have to use – e.g. 20-30 different interactive technologies on a general ward, all with different user interfaces, all of which every nurse is expected to be able to use. From a patient perspective, someone managing multiple health conditions has to integrate information between the different tools and specialisms they have to engage with. We are seeing growing friction as what is theoretically possible slips past what is currently practicable.
 
What do the next 70 years promise? It is of course hard to say. A paperless NHS? – probably not by 2020, but maybe by 2088. Patient controlled electronic health records? – maybe if people are appropriately educated and supported in managing the burden of care; this will require us to address health inequalities brought about by differentials in income, education, technology literacy, health literacy, etc. The huge challenge is not the technology, but the individual and social factors, and the regulations, around it. This will require a new approach to data privacy and security, funding models and regulations that are fit for the 21^st century, and education for clinicians, technologists and the public to ensure these changes are beneficial for all.
 
Of course, the NHS is just one healthcare delivery organization, amongst many globally. Some other health providers are doing things on a shoestring but overtaking the West in many ways by being agile – e.g., investing straight in mobile technology.
 
However, whatever advances we see in technology, care is still first and foremost about the human touch. The technology is there to support people.