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Caregivers and digital health: Bridging the gap in access and usability
November 18, 2024HIN Project Support Officer, You Tae Jeon, writes about the stand-out theme at the multi-day HETT conference this year: the inclusion of caregivers in the development of digital tools and innovations.
Caregivers are people who help others with their health needs. They are a growing but sometimes hidden group – every year 4.3 million people become unpaid carers in the UK.
With up to three out of four Londoners using digital tools to interact with GPs, apps and websites are increasingly becoming important tools for helping people to manage their health, or to manage the health of others in the case of caregivers. Unfortunately, digital exclusion is a significant issue faced by carers. A significant proportion of carers are older adults, who are more likely to have trouble accessing digital tools due to not having access to internet at home or not having the digital skills to use these tools effectively. However, an issue for carers that do have access to these tools, is that they aren’t always designed with caregivers in mind, which can make it hard for them to use services and access the information they need.
Why digital tools can be hard for caregivers
One of the main problems is that digital tools in healthcare are mostly designed for patients, not caregivers. Caregivers play a big role in managing health tasks like appointments, reminders, and understanding treatment plans. By not providing easy access to allow caregivers to use these tools, we effectively make the patient digitally excluded.
More generally issues with user experience design (which may also impact caregivers negatively) includes information being hidden behind complicated menus, and difficulty understanding technical language. Caregivers often feel left out, frustrated, and unable to find what they need quickly.
Another big issue contributing to digital exclusion is confidence. Some caregivers, especially older ones, may not be very familiar with smartphones or computers – this can make using apps or websites difficult. When digital tools aren’t designed with these challenges in mind, caregivers struggle to understand and use them efficiently.
How to make digital tools easier for caregivers
Listening to caregivers’ feedback: According to a Medisafe survey for caregivers, 80% of respondents reported using digital health tools to manage information with physicians and monitoring medications. Whether it is booking GP appointments via their website, or remote patient monitoring via a smartwatch, involving caregivers in the design stage of these digital tools is important. This means asking them what features they need, what confuses them, and how the tool could work better. By understanding caregivers' needs, designers can make tools that are more user-friendly and helpful. Involving caregivers in the process of creating and testing new tools could significantly impact the future usefulness of these tools, a process we refer to as “user experience design” (often referred to as “user centred design”) for healthcare.
Making the NHS work for everyone: The NHS is the main healthcare provider for everyone in the UK. This is unlike some other countries where people might have several different healthcare provider options to choose from. The NHS setup is a helpful one because it means there’s just one main system to improve. However, it also means that integration and usability are more important, as one system needs to be designed to work well for everyone across every part of the population. While there is a wealth of data collected on patients and their caregivers, research has shown that there are significant issues with the quality of data being collected. Therefore, we should develop localised datasets in collaboration with local communities, while ensuring that all caregivers—regardless of age, background, or familiarity with technology—can use NHS tools easily and without confusion.
Simplifying tools: Many healthcare apps are too complex. Simplifying these tools means making them easy to use, with clear instructions and less confusing options. By doing so, it would help caregivers to find important information more easily. Making the language easier to understand is also part of simplifying these tools. Healthcare specialist terms can be hard to understand, so using simpler words and providing definitions would make digital tools more accessible for everyone.
Using local languages: A recent report by The Digital Poverty Alliance suggests that inadequate language support is a key barrier faced in global majority communities. In the NHS, for example, messages are often sent in English. Caregivers who don’t speak English as their first language may struggle to understand important notifications. Having the option to send these messages in multiple languages would help make sure that everyone can understand and respond to them, which could be especially helpful in diverse communities where unpaid caring is often more common.
Why these changes matter
Caregivers are important figures in healthcare – they help patients with everything from managing appointments, to understanding what treatments are needed. When digital tools are easier to use, caregivers can get the information they need quickly and provide better support. By making digital tools more accessible, we can help caregivers feel confident and empowered, which also benefits the people they are caring for.
With the NHS being the sole healthcare system for the entirety of the UK, it was acknowledged how much of a challenge it can be to make improvements that accommodate every person. Caregivers are increasingly becoming a demographic who urgently need greater involvement in how digital services are delivered.
