Advances in technology in medicine are always exciting, and the current trend towards giving patients more power to feed back on all aspects of their health would seem to lead to a better understanding of health conditions and so better care for the patients. However, this trend is in danger of leaving certain groups of patients behind. What are the risks and what can be done to mitigate them?
Introduction
There are various uses of Patient Reported Outcome Measures (PROMs) in healthcare, from medical trials to diagnosis to clinical settings. The validity and usefulness of asking the patients about their state is being proved, and can lead to better outcomes for the understanding of disease as well as for the patient themselves. One might extend this concept to the recent rise in popularity of taking your health into your own hands. There has been considerable development of apps for users to track their own conditions, information which they can then choose to share with their medical advisor or not. This could be logging information about a particular condition such as arthritis, or more general physical data like number of steps taken. Many technological innovations have been developed to support this, generally known as “wearable technology” or “wearables”, such as smart watches which allow the wearer to monitor steps taken, calorie intake, and heart rate.
This sort of digital innovation in healthcare is most often thought of as positive, as is giving patients a louder voice in the system. However, there are downsides to this new trend in healthcare, as the HEE Topol Review from 2019 puts it “technological innovation in health can help to redress health inequalities, but conversely also has the potential to exacerbate them”. The use of PROMs and more generally wearable technology to help people manage their own health is at risk of leaving those most vulnerable in society behind. As those with access to these technologies advance their own and their doctor’s understanding of their health, those without access lose out, unable to use these powerful tools to their advantage.
The Medical Benefits of Using PROMs and Wearable Technology
There are various types of PROMs that patients can be asked to fill out according to their situation. They take the form of questionnaires that may “assess the quality of care delivered to the patient”, or ask the patient about their own experience of their condition. Or even ask about seemingly unrelated factors such as amount of exercise or quality of sleep. Wearables naturally tie in to this, helping the patient monitor their own condition. A clear example of this has been the ability for those who have Type 1 diabetes to monitor and manage their level of glucose with the development of the finger-prick blood glucose meters. This has given independence and power to Type 1 diabetics to go on with their daily lives relatively unhindered and obviously much more safely. Once patients can track their own health they can draw links they may not have seen before, such as correlation between average amount of sleep and levels of depression.
Photo by Andres Urena on Unsplash
Such empowerment can only benefit the NHS who strive to provide better services and treatment, and also may have the added bonus of reducing the number of people who need them, lowering costs and strain. More importantly, it benefits the people who track their own health. Doctors will have much more information about their health, leading to better treatment. If connections between seemingly unrelated symptoms can be drawn then there may be less need to attend medical appointments, saving in costs and time for the patient, especially if their condition requires attending a specialist clinic which may be far from where they live. And of course their experiences are heard, and may “highlight any unmet needs or care areas that are in need of improvement”.
The Downsides?
All these outcomes, however, only benefit those who are able to fully access the means of getting to them. To assume patients can use PROMs and wearable devices is to make a number of assumptions:
- That the patient is fluent in English to a reasonable degree, or has access to an adequate translation or translator
- That the patient’s cultural background is similar to those who devised the test
- That the patient has the technical nous to use the wearable
- That the patient can afford the cost of the wearable
- That the patient has access to the internet
Given that anyone in the UK can use the NHS, these are not safe assumptions to make in the slightest. In 2016 the Office for National Statistics released figures that showed the richest 10% of households have 44% of the wealth, and the poorest 50% have only 9%. There seems to be a real danger that this socio-economic inequality will only be worsened as technological advances in healthcare are made. Is it possible that only the voices of those who can afford and use the technology will be heard and profit from it, while those who cannot will be left with technology that is unsuitable for their needs and medical treatments that do not cater for them. This will only serve to widen the gap. Serious considerations will have to be made to ensure that this is not the case.
Those who cannot
An obvious barrier to filling out a form about your own wellbeing is language and literacy. As of 2011 16.4% of adults in England, or 7.1 million people, could be described as having 'very poor literacy skills', and 0.3% of the population (138,000 people) reported that they could not speak English at all (2011). It may also affect different ethnic groups disproportionately, for example 3% of people from a Bangladeshi background didn’t speak English at all. If faced with a PROM, these people would have to rely on either a translation, or another person to translate for them and help them fill it out. Though this may seem like a perfectly good solution Hunt points out:
“An important issue is whether rigorous translation can by itself establish the appropriateness of an instrument to a new cultural context from the one in which it was developed. Such methods may not establish whether subjective experiences differ in terms of salience from one culture to another, or indeed may fail to identify concerns and experiences not anticipated in the culture in which an instrument was first developed”
This seems relevant to mental health PROMs, such as the PHQ9 which is given to patients with depression. It asks how regularly the patient has felt “down, depressed, or hopeless”. If a concept like depression does not translate well into another culture, it might be hard to gain an accurate reflection of someone’s mental state. Or indeed if a child is having to translate for their parent, the parent may not want to worry the child by admitting that their health is quite as bad as it is. However, these problems are not unique to PROMs but are a wider issue faced by any medical staff trying to help someone who does not speak the language that they do.
A more specific concern facing PROMs and wearable technology is digital literacy. As Baum, Newman, and Biedrzycki point out “digital literacy is increasingly a prerequisite for health service delivery and access to health information”. This might be needing to book medical appointments online, or in the case of PROMs and wearables, filling in data on a device or setting up that device to capture data on its own. This seems particularly worrying for older patients who may not be comfortable with smartphones or smart watches. Finder.com reported in 2019 that of people aged 65 and over, only 40% owned a smartphone, compared to the overall population average of 79%. This could be due to a lack of awareness, or lack of interest. In which case, if there is a move towards relying on patients to provide their own medical data then it will need to come with education around why and how. Medical professionals will need to explain to their patients that having a smartphone may increase benefits to their health, as well as ensuring that they have the means to learn how they work. Simply asking patients to, for example, start tracking their sleep or assuming that they know how many steps they take daily will leave many patients confused. An over-reliance on patients obtaining and giving information digitally will leave those who don’t know how it works behind.
Moreover, what of those who cannot afford the technology? Affordability here relates to both the device itself, including cost of purchase and cost of upkeep, as well as cost of keeping it connected to the internet. Fortunately, the rise in popularity of smartphones and their wider availability has meant the cost of purchasing one has come down. As cited before 79% of UK adults owned a smartphone, which more often than not come with some sort of health tracker baked in, like a pedometer. However, more specialist devices like smart watches and fitness trackers worn on wrists that can monitor heart rate do not have such a high up take, with numbers around 30%. Cost of having both a smartphone and a wrist device must be a factor here, as well as connection to internet. Those who can afford both will have quick access to a wealth of information about their health and will be able to make informed decisions leading to better health and in the end, lower costs. Those who cannot afford the technology will face the financial consequences of poorer health: less time spent earning, more money on childcare, more money spent on transport to get to appointments, and so on. This in turn leads to a wider gap in the already large wealth divide.
Those who can and the dangers of doing so
There are further, more sinister, implications of using PROMs and wearables. An issue most people are well aware of these days is the collection of large amounts of data and what is done with it. Privacy of individuals is a clear concern, but there are also far-ranging uses of data that may affect larger groups of people as a whole. Selling data for machine learning is common practice now, but what kind of products is this machine learning going towards? There are many reports of racist AI which does not recognise the faces of black people, or, more recently, the algorithm that only downgraded the results of pupils who went to non-fee paying schools. In asking people to produce data for their own medical needs, they could in fact be contributing to algorithms which further down the line will disadvantage them. More data is generally thought to be positive, since with knowledge comes power. However, without proper attention paid to all the ways this data is used, the inequalities in society will only be worsened.
If the previous point seems a little far-fetched to some, then there are also clearer direct negative effects of relying on people to use wearables. There seems to be a link between fitness tracking, calorie counting and burning, all of which are made simpler with smartwatches, and eating disorders. Dr Carolyn Plateau, a lecturer in psychology at Loughborough University, conducted a study exploring this link and said in one interview
_ “Our findings were interesting as they indicated that those who did track their activity or food intake showed higher levels of both disordered eating and exercise than those who did not. In particular, higher levels of purging behavior (e.g. excessive or driven exercise to control or modify weight or shape) was found among the tracking group.” _
It would seem that asking people to monitor steps and calorie intake for health purposes could not only let those who are not able to do so easily flourish in their dangerous behaviours, but also start others down the same track. If this is the case, the technology would only be an asset to the section of society wealthy enough to afford it, know how to use it, and have no absolutely no disposition towards unhealthy eating habits, an increasingly small proportion.
Conclusion
The greater use of PROMs and wearables in the near future is exciting, and will hopefully lead to better care for patients in a number of ways. However, the implications of rolling them out more widely must be thought through carefully for there is a significant risk that a section of society will be left behind and even suffer. If good health care comes to rely on being able to self-report and use technology safely and confidently, then those who cannot for whatever reason will not receive good health care. That is not to say that we should not be aiming for technological advances, but that everyone should be brought along for the ride. Education and continuous research and careful monitoring will be essential in making sure that all people benefit from these exciting advances.
References
https://topol.hee.nhs.uk/wp-content/uploads/HEE-Topol-Review-2019.pdf
https://www.england.nhs.uk/statistics/statistical-work-areas/proms/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6219423/
ONS, Wealth in Great Britain Wave 5: 2014 to 2016
https://literacytrust.org.uk/parents-and-families/adult-literacy/
Fran Baum, Lareen Newman, Katherine Biedrzycki, Vicious cycles: digital technologies and determinants of health in Australia, Health Promotion International, Volume 29, Issue 2, June 2014, Pages 349–360
https://www.finder.com/uk/mobile-internet-statistics
https://www.statista.com/statistics/1044033/uk-smartwatch-health-trackert-ownership/
https://www.wired.com/story/ai-needs-data-you-should-get-paid/
https://www.wired.com/story/best-algorithms-struggle-recognize-black-faces-equally/
https://www.techradar.com/uk/news/do-fitness-trackers-have-an-impact-on-eating-disorders
Fitzpatrick R, Davey C, Buxton MJ, Jones DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technology Assessment 1998; 2(14)