Digital technology has become engrained in our daily lives, most of us can relate to never being more than a metre away from our phones. With digital technology improving efficiency in our everyday lives, digital healthcare (the use of software, hardware and apps to support patients and improve healthcare outcomes) has also grown significantly in recent years (1).
Digital healthcare can be used across a range of conditions and treatment pathways. There is now a myriad of information relating to its use, benefits, disbenefits and the risks of it widening healthcare inequalities for those who are unwilling or unable to access services it offers – the digitally excluded.
Working with the NHS England, East of England Children and Young People (CYP) team, we were interested to understand how the specific needs of CYP have been considered in relation to digital technologies.
Specifically, by increasingly adopting digital health care technologies, are we enabling CYP to better access to healthcare, or might we be widening an access gap?
Our team undertook a rapid evidence review to understand what obstacles CYP may face when using digital healthcare. The review drew the following themes:
Impact of the COVID-19 pandemic
The COVID-19 pandemic exposed how a lack of digital access negatively affected children’s learning, life chances and social development (2). When thinking about CYP who are most likely to be left behind, we may be afforded or gather insights into how, if not carefully considered, digital health technology could exacerbate healthcare outcomes for those same CYP.
Access to devices and the internet
62% of five to 15-year-olds share access to devices and the internet, this along with poor Wi-Fi, particularly in less well served areas, may make accessing virtual appointments or remote engagements very difficult for these CYP (3).
The social determinants of health: poverty, care and unemployment
4.2 million children in the UK, approximately three in 10, live in poverty (4), which is the most significant driver of digital exclusion and one that exacerbates health and care factors. Our rapid evidence review suggested that CYP from larger families, minority ethnic groups and those with disabilities can sometimes face high levels of poverty. Equally, Children in care and young people not in education or employment are also at a higher risk of digital exclusion (5)(6).
Personalisation and privacy
The rapid review pointed to limited understanding of the preference of individuals for digital healthcare vs. other ways of receiving care and the impact of such preferences on health outcomes. The NHS personalised care agenda highlights that a one-size-fits-all health and care system is not appropriate for the needs and expectations of our diverse population and this needs to be adopted when considering and designing digital healthcare services (9).
The need for an appropriate and private space
For telehealth (providing healthcare at a distance rather than face to face) to be effective CYP need a safe space in which to speak that allows for personal dignity and privacy (7)(8).
Accessibility and digital literacy
It is estimated that 16% of over 15’s do not have basic digital literacy skills (3). The impact of this on children and young peoples is not well understood but highlights the need for nuance when offering or recommending digitally driven health solutions.
Beliefs and trust
CYP can be reluctant to accept digital health technologies because of uncertainties around its validity and reliability, as well as having concerns around their privacy online (10) (11). Parents also have concerns around the security of their child’s health data with online services (12). It is vital to ensure the security and safety of children’s health data when using digital technologies.
Alongside our rapid evidence review we wanted to understand the perspectives of innovators who offer digital health technology designed for CYP. We sent a survey to innovators* to gauge their understanding of, and engagement in, the digital exclusion of CYP. Whilst the response rate was low and not representative of all innovators developing technologies for CYP, it found:
50% said digital inclusion was considered in the design of their product.
100% said digital inclusion was a priority in their organisation.
Technologies offered a variety of accessibility functions such as multiple languages and ‘easy read’ assessments. However, compatibility with commonly used digital assistive technologies was found to be patchy.
84% said their innovations require internet access or mobile data to function.
None of the respondents were working with schemes to support access to devices or data required to access their technology.
Our conversations with innovators led us to question whether a lack of clear policy guidance is preventing innovators from best supporting our children and young people.
(*Innovators with solutions for diabetes monitoring, mental health and hospital at home were invited to complete the survey)
Whilst there are clearly areas to consider for improvement, there are examples of fantastic practice from which lessons can be drawn.
The Children and Young People’s North East and North Cumbria (NENC) Diabetes Network were asked to ‘level up’ access to diabetes technology within the Integrated Care System (ICS) for ethnic minority groups and families living in deprivation. The network formed a collaboration to offer repurposed devices to families who attended clinics and required a mobile device, sim card or laptop to support their diabetes management.
In the first seven months of the programme, there were 160 referrals, feedback included:
“My daughter is managing great with the phone she was given, it makes life a lot easier as we don’t have to keep finger pricking to get a blood glucose, we can just use the app set up on the handset.
Also, because we received a sim card too, we have few worries about payments and internet usage, it’s also allowed us the freedom to allow her to go out and spend time at family and friends without us parents having to tag along. She can use the apps herself and an adult just watches over her to make sure there’s no issues. We as parents can’t thank you enough for the phone.”
Our efforts in this area are only scratching the surface of what is a complex and changing environment. However, here are a few important considerations required to ensure the needs of all our CYP relating to digital health technologies are met.
Clear, evidence driven guidance for commissioners
Research and white papers on digital inclusion and the aging population are common. However, the impact, practicalities and extent of digital exclusion on CYP’s health lacks both research and policy guidance. Particularly that which takes account of the views of CYP and their caregivers.
Clear, comprehensive and consistent processes
Increased consistency in decision-making processes, how commissioners consider who will benefit, who will be excluded, how and who will mitigate risks linked to digital heal technologies and how to implement them equitably.
Uniform data collection
Systematic recording around individual’s digital healthcare needs is essential to understand the scale of the challenge and to ensure appropriate support for, or alternatives to digital healthcare are available and offered to those most in need.
Our patients and clinicians know best
Our healthcare professionals are positioned to understand whether CYP can benefit from digital technologies and can recognise the complexities of offering a CYP digital technology. Services need to ensure digital inclusion is in the forefront of every clinician’s mind so that clinicians feel empowered to offer the most appropriate option for the best possible care, whether digitally enabled or not.
Coordinate access to mobile devices and data
Digital healthcare is likely to continue to grow, so developing relationships with device and data providers and working closely with technology providers may offer opportunities to ensure equity of access.
Correctly delivered digital healthcare has the potential enable children and young people to thrive. To ensure we care for all of our CYP careful consideration must be given to a range of complex but interconnected factor, to ensure digital healthcare isn’t widening health inequalities for CYP.
We are pleased that this work lays the groundwork for future developments in this area.
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