Dr Sarah Alden, Social Policy Researcher for the TEC Action Alliance, a group of organisations personalisation initiatives, discusses new research that identifies what people and their families want most from digital care, but don’t always get.
I’ve spent the last six months asking people who draw on care what they want from the devices and apps designed to support them – and the results have been eye-opening.
One woman told me how technology is often imposed on people. “Don’t ‘do’ to people,” she explained. “Make sure communication works both ways and listen. Technology is not for everybody – it will take away from some as well as add – if you don’t have a conversation you won’t know.”
This piece of advice set the tone for much of my research into what people want from technology enabled care (TEC). In 2023 I was commissioned by the TEC Action Alliance, a group of 30 care organisations – including the Association of Directors of Adult Social Services (ADASS), the Local Government Association, Care England and the TEC Services Association (TSA) – to identify people’s priorities around digital care.
This alliance was set up to put the voice of individuals, families and unpaid carers at the heart of technology enabled care and they wanted my research to inform a report about how to implement personalised TEC at scale.
The problem was that no-one really knew what older and disabled people wanted from TEC because there hadn’t been a large-scale study asking this question. When I looked at previous research, the views of care workers and care organisations dominated – there was far less on the opinions of people drawing on support.
This speaks to the issue of paternalism that many in the care sector are trying to tackle. Historically, people who draw on care have been seen as passive service users who had to be fixed by professionals. This sometimes led to care packages, including technology, being given to people with little consultation, leading to low engagement and poor outcomes.
Thankfully this power dynamic is slowly changing and people who draw on support are being recognised as experts by experience. I tapped into this real-life expertise by examining over 100 perspectives and conducting 42 interviews with people and families, and some clear learnings emerged.
I discovered that people didn’t use acronyms or technical terminology to describe devices. Instead, they talked about how tech supported their lives. Phrases like ‘providing support if I need it outside my home’ or ‘living well in and around my home’ were regularly used, rather than ‘GPS tracking device’ or ‘lifestyle monitoring system’.
The need for a common, simple TEC language to help people navigate the options really came to the fore. One family carer told me: “I have heard about pendants, but I don’t know about anything else… there is so much of it, it’s hard to know where to start.” Another said, “I could do with a technology expert… to…talk me through what is best…someone who sits down and listens.”
As I continued my research, nine principles around what people want from TEC surfaced:
- Awareness: To know more about the ways technology can meet their needs.
- Independence: Devices and systems that support them to do more for themselves.
- Control: To maintain control over care technology, wherever possible.
- Reassurance: Peace of mind for themselves and their families.
- Seamlessness: Technology that is joined-up and compatible with familiar devices.
- Personalisation: Technology to be tailored to their needs.
- Equal decision-making: A say in the design and functionality of technology.
- Support: Help, advice and training if they struggle with technology.
- Privacy and security: Reassurance around online safety and data autonomy.
You can read about my research in the TEC Action Alliance’s report, ‘Implementing TEC so we can all live gloriously ordinary lives’ [1] and more detailed findings are here.[2]
My hope is that these principles are adopted by councils, care and housing organisations when they procure care technology, so suppliers respond to what people really want from TEC – not what they think they want.
@TSAVoice
tec-action.org.uk
[1] www.tec-action.org.uk/implementing-tec-so-we-can-all-live-gloriously-ordinary-lives/
[2] www.tec-action.org.uk/wp-content/uploads/2024/01/SarahAldenImplementingTechnology-V-FINAL-240124.pdf
