Getting Real: CareFree

This month’s story CareFree by Keith Brooke is an exploration of potential care provision based on simulated environments. Where many of the stories over the last year have primarily focused on the recipient of care or patient in a scenario, CareFree is from an external perspective. Early in the story, we learn about Billy and his care needs, which are varied and complex. Billy has a diagnosis of DMD (Duchenne Muscular Dystrophy), which requires a range of tailored care and treatments for multiple organ systems. The interaction between Julia and her brother Steve is at times tense and highlights the impact providing care can have on relationships and lives. 

Through the story, we learn about a novel form of home care solution, which is a “care pod” providing support for Billy, as well as simulating a form of reality for him to experience. Billy’s pod is installed in his mother’s home and is a standalone setup. The description of a pod providing an artificial reality, care and sustenance is reminiscent of The Matrix. However, if we consider how the pods could be applied to a hospital or care home setting, the implementation could be similar to capsule, or pod hotels in Japan. While the setting in CareFree is a domiciliary care context, it raises a question in my mind about several settings that health or care are provided in. 

The layout of hospital wards has remained largely unchanged for hundreds of years. The materials and technologies implemented on wards have evolved significantly. However, beds arranged in a radial fashion around a room mostly seems to have endured. Implementing a pod system in a hospital initially seems inhumane, although as is discussed in the story, there are potential ways to enrich a health or care environment. This may, in time, improve the experience of being on a ward or other contexts.  

Our imagination is given the freedom to define the limit of the technology implemented in Billy’s pod. We know that Billy’s environmental experience is a simulated or virtual reality. But we do not know exactly how it is administered or how sophisticated the delivery of this experience is. In recent years, research into memory and perception has been able to augment the experiences of a variety of different species. This ranges from the false training of snail memories, or deleting mouse memories, all the way to improving working memory in humans through brain stimulation. These experiments attempt to alter memories with the application of artificial stimuli. Much of this highly experimental research has the ambition of improving memory for patients suffering from cognitive impairments or forms of dementia. It will certainly be some time before such approaches make it to a hospital or care home setting for entertainment. 

There are many other experimental approaches to cognitive activity, which can record signals rather than stimulate activity. As an example, the development of EEG (electroencephalogram) for clinical research or diagnostic purposes has provided new ways for researchers to measure brain activity. A series of electrodes are placed on the scalp and local electrical currents are recorded to provide a measure of brain activity. Alongside clinical research, recent experiments have explored the use of EEG for the control or operation of digital devices. Some examples include being able to control drones and remote control cars. This is still a long way off many instances of “mind control” considered in sci-fi stories. However, there are approaches to signal filtering and combining with complimentary signal or behavioural data which can help to improve the accuracy and performance of EEG based brain computer interfaces. Such brain interfaces, as well as peripheral nerve interfaces, are being explored for clinical use in prosthetics or to aid movement in wheelchair users. These approaches also have great potential for individuals with conditions affecting the ability to speak. 

There is also a growing consumer focused neurotechnology market, where devices and products are developed to provide a substantive link between computers and minds. The Fictions series is designed to provoke discussion and often poses questions or considers the future through a somewhat dystopian lens. Many of the neurotech applications in development should probably be viewed with skepticism until robust data about their effectiveness and safety are publicly released. Concerns have been raised about claims of how specific neurotech tools are and the resolution of technique. Some of these approaches have been accused of being “suicide for the human mind”. It is exciting to see so much activity in areas which have clinical or care potential. But there are still significant limitations to the technology, alongside ethical dilemmas, which shouldn’t be forgotten. If we consider these technologies and experiments alongside the setup in CareFree, we can start to imagine that the virtual reality being provided for Billy might be one that is independent of a current state–of–the art headset. 

Environment is important in many ways for our development and health throughout our lives. Having a stimulating and enriched environment is crucial to human and animal well-being. Research in rats and mice have shown that environmental enrichment can have significant effects to improve learning and memory. Non-human primates require environmental enrichment as a minimum standard of care, and it is important to consider that socialisation is similarly essential for well-being. Humans have diverse enrichment and social needs in daily–life and these needs should be considered as a part of a health or care package. Towards the end of the story, we learn of a vlogging interface in the pod. Steve uses this, and a range of multisensory devices, to communicate with Billy. Vlogging and social media have not yet moved beyond visual and auditory cues. In time it seems feasible to imagine that with the right augmentation, alongside seeing and hearing someone else’s experience online it could also be touched, tasted, or smelled. 

Social media and the online world are often scrutinised from the perspective of mental health. Many concerns have been raised about the influence of social media on the mental health of young people and adults. A recent study from the University of Oxford did not find a link between social media impact and mental health in 2010 and 2019. A report published this year from the Education Policy Institute and The Prince’s Trust did however find a link between social media use and negative impacts on mental health in teenagers. These two contradictory findings demonstrate how complex societal issues of technology and well-being are. Policymakers and regulars alike need to be aware of such conflicts and understand what is appropriate and proportionate. 

We are living through a time where COVID-19 is presenting one of the greatest challenges the NHS and care sector have ever experienced. There have been significant alterations to healthcare policy in the last year, with data and technology being central to much of the debate. The upcoming launch of the National Data Strategy for Health and Care, the Health and Care Bill and the long waited for separate Social Care Bill, should be significant in shaping the future of health and social care in the UK. The recovery from the pandemic will be a good opportunity to consider where data, technology and innovation are being utilised for highest quality and fair service provision.