Alexis Paton is Director of the Centre for Health and Society at Aston University, Birmingham. She is on X: @dralexispaton
I bet you’re reading this on your phone, right? Maybe on the train or waiting for the kettle to boil. Some of you, go on, admit it, are reading this in the loo. Ok, so it might not be a phone, but it will likely be some kind of tech: tablet, Kindle, maybe a computer. For many people, our tech is the gateway into the digital world that we use every single day, practically every minute that we are awake. Against this backdrop, the announcement of a digital patient passport, that carries our medical record with us, makes sense. It may even seem to be so obvious that it’s odd the NHS hasn’t done it yet.
On the day of the announcement I told Wes Streeting, our Secretary of State for Health and Social Care, that I welcome his goal of more easily accessible medical records across trusts and for patients. But, before I could endorse it, I needed to know the answer to an important question: for their latest foray into the shift from analogue to digital, just who were the Government including in the consultation and how were they going to consult with them?
I ask, because not everyone has a smart phone. Not everyone has a tablet or computer. Heck, lots of people in the UK don’t even have regular access to the internet1,2 — and it’s not just patients. Some NHS trusts have such aged, broke down digital infrastructure that a fax machine remains a primary form of communication.3
“… not everyone has a smart phone. Not everyone has a tablet or computer. Heck, lots of people in the UK don’t even have regular access to the internet …”
But, seeing as the Government is hellbent on moving to a fully digitised system, let’s talk a minute about what needs to happen so that the development and use of something like a patient passport can be done in a meaningful and inclusive way. It seems right that we talk about it here, as primary care is where a lot of digital-first initiatives throw up barriers to healthcare access for patients and the healthcare staff who care for them.
Have you tried turning it on and off again?
Before we even begin to discuss the pitfalls of a digital NHS for patients, let’s all just acknowledge the massive crumbling elephant in the room: the NHS cannot cope with its current digital systems. An analogue to digital shift is more than digitising records and NHS apps. Digital infrastructure is lacking and lagging in the NHS and its digital readiness is poor. Whole GP surgeries, hospitals, and trust will need full tech upgrades to even begin thinking about operating in a digital-first way. Just last week the Financial Times reported that only 20% of NHS organisations are ‘digitally mature’, with some NHS trusts and hospitals working with such outdated tech that even basic tech like printers and software programmes fail to launch on a daily basis.4 Not a great starting point for the Government’s desired NHS digital glow-up, especially when the UK has effectively de-vested in NHS digital infrastructure to the tune of almost £37 billion in comparison with its European peers since the 2010s.5
Digital exclusion: the silent killer
About 2 million households across the UK are fully offline and close to 5 million cannot reliably connect to the internet.1 Of those who do have access, in the 2022–2023 year, 1 million had to cut back or cancel what internet they were able to access due to cost-of-living concerns.6 For comparison, altogether, that is about the same number currently stuck in the NHS waitlist backlog (8 million) — an acknowledged healthcare crisis in its own right.7
Areas of deprivation in particular, where people tend to have the highest health needs, are often digital wastelands.8 People living in deprivation have limited access to the internet. This might be limited data, no internet in the home, or no access to devices that allow them to fill out GP forms, send photos of concerning rashes, or access a digital app to get information from their medical record.
Digital exclusion is more than just a question of it being difficult to fill out paperwork. There are already negative consequences of the limited digitisation that has taken place in primary care, manifesting as poor health outcomes. What it means in practice, before we even begin to contemplate how to design and use a digital patient passport, is that the form doesn’t get filled out. The picture doesn’t get sent. The problem goes undiagnosed until it is so bad the person presents in hospital for something that could have been dealt with more efficiently by GPs. But it doesn’t stop there.
Areas of deprivation often have a lot of people where English is a second language too. This means that online ANYTHING, including a video consult, makes communication much more difficult. This isn’t a hypothetical. Working with our community research partners, myself and the research team found that in areas of deprivation where English was not the primary language, patients struggled to get their problem understood when they had to communicate in any way that wasn’t face to face5. Body language and hand gestures are a key part of how we communicate in a foreign language. This is lost with online gatekeeping. Again, another set of patients go unseen.
This is before we even unpack those who lack online skills entirely. Around 2.7 million people cannot complete simple tasks like opening an internet browser.6 Age is definitely a factor, with one in three people aged over 65 years lacking basic skills to use the internet to its full advantage.9 People with disabilities are also less likely to be using the internet and be digitally active in comparison to those without disabilities.2 Given the health needs of an ageing population and the (understandably) often complex health needs of people with disabilities, it is worrying that these very groups are not just unable to access the digital health services they need, but they are often left out of consultations about them too.
“While much can be gained from an analogue to digital shift, it needs to be done meaningfully, engaging directly with those populations who will be unable to use digital-first infrastructure.”
Anybody who is anybody (online at least), knows that the Department of Health and Social Care (DHSC) has launched an online consultation on how to be a better NHS.10 Except, of course, all the patients that most need to have their say have been effectively silenced by the choice of an online platform to crowd-source solutions. And as funny or eye-rolling as it may be to suggest Daleks should manage the nation’s health care or Theresa May’s singing be piped into crowded emergency departments, at the heart of this consultation is a misunderstanding of how patients actually interact with the NHS to get their healthcare needs met.
So now what?
Digital health is not a silver bullet and has so far mostly worked to widen inequities, not reduce them. While much can be gained from an analogue to digital shift, it needs to be done meaningfully, engaging directly with those populations who will be unable to use digital first infrastructure or will only be able to do so with well thought out support. What that support might look like will be different for each patient community. For some it may look like digital hubs where devices and internet are available for those without. For others it may be about providing free-at-the-point-of-access digital training so that they can navigate the digital shift. For some it will mean providing an analogue service, because digital is simply not going to work. The only way to find out what these communities need, is to go out and ask them: face to face.
We cannot ignore the impact that digital exclusion, whether it be digital poverty, a lack of digital skills or even ageing digital infrastructure, has on our population’s health. It is directly contributing to poor health outcomes. A shift to digital that does not account for this, does not engage with the communities that need health care the most, will leave patients behind, entrenching inequalities. Digital health must be developed inclusively, working to reduce health inequalities and widening access to care.
I’ve put my money where my mouth is on this and offered my expertise to help the DHSC succeed in doing just that. My phone hasn’t rung yet, but given Wes’ love of digital, maybe I should be checking my Snapchat instead.
References
1. Lloyds Bank. 2023 Consumer Digital Index: the UK’s largest study of digital and financial lives. 2023. https://www.lloydsbank.com/assets/media/pdfs/banking_with_us/whats-happening/231122-lloyds-consumer-digital-index-2023-report.pdf (accessed 24 Oct 2024).
2. Office for National Statistics. Internet access — households and individuals, Great Britain: 2020. 2020. https://www.ons.gov.uk/peoplepopulationandcommunity/householdcharacteristics/homeinternetandsocialmediausage/bulletins/internetaccesshouseholdsandindividuals/2020 (accessed 24 Oct 2024).
3. Adams S. NHS is STILL using 800 fax machines despite government vowing to phase them out almost four years ago. Daily Mail 2022; 7 Aug: https://www.dailymail.co.uk/news/article-11088377/NHS-using-800-fax-machines-despite-government-vowing-phase-four-years-ago.html (accessed 30 Oct 2024).
4. Hughes L. ‘Operating in the Stone Age’: NHS staff’s daily struggle with outdated tech. Financial Times 2024; 16 Oct: https://www.ft.com/content/e456bd4c-d7b1-4446-a538-be5b555166a1 (accessed 24 Oct 2024).
5. Darzi A. Independent investigation of the National Health Service in England. 2024. https://assets.publishing.service.gov.uk/media/66f42ae630536cb92748271f/Lord-Darzi-Independent-Investigation-of-the-National-Health-Service-in-England-Updated-25-September.pdf (accessed 24 Oct 2024).
6. House of Lords Communications and Digital Committee. Digital exclusion. 3rd Report of Session 2022–23, HL Paper 219. 2023. https://publications.parliament.uk/pa/ld5803/ldselect/ldcomm/219/219.pdf (accessed 24 Oct 2024).
7. Stiebahl S, Kirk-Wade E, Harker R. NHS key statistics: England. 2024. https://researchbriefings.files.parliament.uk/documents/CBP-7281/CBP-7281.pdf (accessed 30 Oct 2024).
8. Benoit C, Jeffery A, Cleary S, et al. Health inequalities in Birmingham: barriers encountered in underserved wards in East and West Birmingham. 2023. https://www.aston.ac.uk/research/bss/research-centres/centre-health-society/health-inequalities-birmingham (accessed 24 Oct 2024).
9. Age UK. More than 1 in 3 over 65s (4.7 million) lack the basic skills to use the internet successfully. 2024. https://www.ageuk.org.uk/latest-press/articles/2024/more-than-1-in-3-over-65s-4.7-million-lack-the-basic-skills-to-use-the-internet-successfully (accessed 24 Oct 2024).
10. Department of Health and Social Care. Government issues rallying cry to the nation to help fix NHS. 2024. https://www.gov.uk/government/news/government-issues-rallying-cry-to-the-nation-to-help-fix-nhs (accessed 30 Oct 2024).
Author photo: Mike Sewell, Copyright University of Leicester 2019. Department of Health Sciences’ Away Day at Stamford Hall in Oadby.
Featured image by Camilo Jimenez at Unsplash.
