MyPal Spring 2022 Newsletter Editorial: Ethics and equity in digital health care research
“Information allows choices, individually, nationally and internationally. Ultimately, the network should include everybody.” (Cicely Saunders, Founder of St Christopher’s Hospice).
I am honoured to contribute to this edition of the MyPal newsletter with some thoughts about the challenges of equity in access to digital health and literacy based on my work in producing and providing international information on palliative care.
A friend was recently in an intensive care unit (ICU) following emergency surgery.
Confused when she came round, she was diagnosed with ICU delirium and her husband was informed that this was ‘common but would pass’. He was concerned about how to support his wife, but no other information was given. By chance, I had recently heard about an intensive care patient support charity called Steps ICU. I went online, downloaded a leaflet explaining ICU delirium and how you might help patients affected by it and emailed it to my friend’s husband. He later admitted to feeling a little sceptical when the phrase ICU delirium was first mentioned to him but said the leaflet explained it very well and had put his mind at rest. Job done: information delivered in a clear and timely manner thanks to digital access. Two things struck me: the power of access to digital health and the sad fact that my friend’s husband was not directed by the hospital ICU staff to information that was readily available. He had definitely not been included…
Health information and services are increasingly delivered digitally with far greater diversity and sophistication than ever before. But using digital technology effectively is a form of health literacy – the ability to read, understand and act on basic health information – and those who lack these skills risk being excluded from the information network. And, as the above example shows, if you are in a new and unexpected situation you may still need a signpost to the most appropriate digital health information.
While health literacy is a crucial issue for the public, it may be less of an issue for health professionals. However, palliative care is a global community and for many people, English may be a second or even third language. When the European Association for Palliative Care (EAPC) launched its blog and social media activities a key objective was to disseminate topical information on palliative care free of charge, in a format that was short, engaging and quick to digest for busy practitioners and academics alike. Above all, the content would be accessible to everyone: clear, concise and free of the jargon that can be daunting and time-consuming.
Lack of confidence or experience in technical skills is a further challenge to accessing digital healthcare. A palliative care librarian comments that newcomers to palliative care research with access to excellent university databases may still benefit from personal guidance and support to achieve that extra dimension to their research. Effective collaboration between palliative care librarians/information specialists, healthcare professionals and patients is further developed in a recent post on the EAPC blog, How information specialists/documentalists support the patient carer relationship.
Judging by the frequent plea to ‘unmute’, so characteristic of the pandemic, coping with new digital technology may be unnerving even for the most competent practitioner or researcher! I was often surprised by the many very experienced palliative care professionals – people who had contributed extensively to print publications – who initially expressed mild panic at the thought of contributing to the EAPC blog. I think the contributor’s guidelines helped to reassure them since those who feared the most often produced the most engaging content.
Inequality is not limited to the world’s poorer countries. In the United Kingdom, 11 million people (20 per cent of the UK population) lack basic digital skills, or do not use digital technology at all. These are likely to be older, less educated and in poorer health than the rest of the population. 1 The UK has an ageing population and older people, who may be the most likely to have cancer, can be especially disadvantaged in terms of digital access. The ways in which the internet is accessed also varies with age. In 2018, 77 per cent of adults in Great Britain reported accessing the internet “on the go” (i.e. via a smartphone or tablet). However, this declines with age, with 69 per cent of those aged 55 to 64 years and 39 per cent of those over the age of 65 years reporting this.2 A briefing paper published by Age UK in 2021 states that 42 per cent of people aged +75 years do not use the internet, or use it less than once a month. The most common reasons being a lack of digital skills, trust in the internet and lack of access to good enough equipment and/or broadband. Other research undertaken by Age UK has also shown that older people are worried about keeping up with changes in technology, lack of help when things go wrong and difficulties due to physical impairments or cognitive decline.3
Before the internet, many palliative care staff struggled to obtain journal articles, books and training. Thanks to digital access, things have improved hugely. In England, all staff working in the National Health Service (NHS) have a wide range of digital resources free at the point of use, while the World Health Organization’s HINARI programme offers free access to biomedical and health literature for low- and middle- income countries. Selected palliative care journals, and individual articles, are open access and many websites, such as the International Association for Hospice & Palliative Care, offer access to publications and information. It may also be worth subscribing to the EAPC blog and social media for news of free online training courses, webinars and posts that provide the background and a link to full-text journal articles, many of which will be available free to EAPC members.
In its Global strategy on digital health: 2020–2025, the World Health Organization (WHO) aims “to strengthen health systems through the application of digital health technologies for consumers, health professionals, health care providers and industry towards empowering patients and achieving the vision of health for all”. Equally, it recognises the urgent need to support the least developed countries in implementing digital health technologies, such as resources, an enabling infrastructure, education, human capacity, financial investment and internet connectivity.
Let’s hope that the WHO strategy and the efforts of other organisations that are helping to address digital exclusion may pave the way for better equity in access to digital health – and a network that will ultimately include everybody.
- NHS Digital. Digital inclusion guide for health and social care 2019. NHS Digital, 2019, accessed 8 March 2022, https://digital.nhs.uk/about-nhs-digital/our-work/digital-inclusion
- Office for National Statistics. Exploring the UK’s digital divide, https://www.ons.gov.uk/peoplepopulationandcommunity/householdcharacteristics/homeinternetandsocialmediausage/articles/exploringtheuksdigitaldivide/2019-03-04 (2019, accessed 8 March 2022).
- Briefing Paper. Digital inclusion and older people – how things have changed in a Covid-19 world, Age UK, March 2021.
- Global Strategy on digital health 2020–2025. Geneva: World Health Organization 2021. Licence: CC BY-NC-SA 3.0 IGO.
Avril Jackson has worked for more than 40 years helping to produce and provide palliative care information. She managed the Hospice Information Service at St Christopher’s Hospice in London, UK, a resource for professionals and the public, from 1979 to 2010. In 2012, she joined the European Association for Palliative Care (EAPC) as editor of the EAPC blog and social media lead and retired earlier this year.