Lived experience by design means building technology with an understanding of how it will be experienced by the people affected by it, not just the professionals who use it.
For Thalamos, this is central to responsible innovation. Our products are used in environments where decisions can affect liberty, autonomy, dignity, risk, treatment and care. In those settings, it is not enough for technology to be technically effective, legally accurate or operationally efficient. We also need to recognise the human impact of digitising such processes.
This is why lived experience leadership has been embedded in the Responsible Innovation Group (RIG) from the outset. The lived experience role does not seek to provide a single, definitive account of what every person will feel or need. No individual can represent every experience of mental health services, mental capacity processes, crisis care or legislation. Instead, the role intersects with the RIG team bringing challenge based on personal insight, wider testimony, expertise in policy development and sustained engagement with people whose lives have been shaped by these systems.
New isn’t automatically better
That approach matters because innovation is not automatically good simply because it is new. In mental health and crisis care, where services are often under pressure and change can be urgently needed, new technology can be welcomed as progress before it has been properly tested against the experiences and expectations of the people it may affect. Lived experience by design challenges that assumption. It asks whether a product genuinely makes things better for people, whether it supports safer and more respectful care, and whether it risks creating confusion, distress or unintended harm.
This perspective needs to be present from the start of development, not added as a final review. When lived experience is only considered at the end, it risks becoming a form of approval rather than a source of design insight. At Thalamos, the aim is different. Lived experience helps shape how products are conceived, designed, tested and improved. It influences the questions asked before a workflow is built, the language used within a product, the assumptions behind a process, and the point at which technology should step back and enable people delivering care to speak to each other directly.
More than personal stories
Lived experience is often misunderstood as simply bringing personal stories into a discussion. Its value is much broader than that. It provides a way of recognising patterns that may otherwise go unnoticed and asking questions that technical, legal or clinical expertise alone may never prompt. It introduces a perspective that helps development teams understand not only how a product works, but how it is likely to be experienced by the people whose lives it may affect.
A feature may appear efficient, legally sound and clinically appropriate, yet still create an experience that feels confusing, intimidating or impersonal for the person moving through it. Lived experience helps identify those moments before they become embedded in everyday practice. It encourages teams to consider not only whether a workflow functions correctly, but also what assumptions it makes about the people moving through it and whether those assumptions are fair.
In practice, this can mean asking whether wording within a workflow unintentionally implies blame, whether a process assumes a particular legal outcome too early, or whether a digital step could increase anxiety for someone already in crisis. It can also mean challenging the idea that every problem should be solved with more technology. Sometimes the responsible answer is to simplify, pause, redirect, or make it clearer that a professional conversation is needed.
This is particularly important at the point where technology meets human decision-making. A digital system can improve communication, provide structure and make information flow more safely. But it cannot fully understand anxiety, distress, uncertainty or the tension between different parts of a system. Lived experience by design helps Thalamos recognise those limits and build products that support human judgement rather than trying to replace it.
It also recognises that digital systems are never neutral. Once introduced into practice, they begin to shape behaviour. The language they use, the order in which information is requested and the decisions they appear to prioritise all influence how professionals work and how people experience care. Lived experience helps ensure those choices are made consciously rather than by accident, recognising that seemingly small design decisions can have a lasting impact on trust, confidence, dignity and ultimately outcomes
It also helps RIG manage the tensions that already exist in mental health and crisis care. Conflicts often arise between speed and safety, operational demands and individual rights, professional authority and personal autonomy, or institutional needs and patient experience. RIG does not remove those tensions. It creates a structured way to acknowledge and navigate them, ensuring that decisions are informed by more than a single professional perspective.
Keeping the person at the centre
For Thalamos, this is why lived experience is not a symbolic addition to responsible innovation. It is one of the ways we ensure our products remain connected to the people, services and decisions they are designed to support. It helps keep the person at the centre of the conversation, even when discussions become highly technical, legal or operational.
Lived experience by design means remembering that every workflow contributes to the service user being cared for. It requires making space for the perspective of the person in crisis long before they ever encounter the technology itself, and asking what a process looks and feels like from the other side, even when that person is not in the room.
If you’d like to find out more about the structure and process Thalamos Responsible Innovation Group then visit our dedicated webpage or read about its origins in our feature.
You can also read interviews with each RIG member:
