Time for a change: Is the lived experience role evolving?
There’s a feeling in the air, isn’t there? A sense that the way we involve patients and carers in healthcare decisions – the very lived experience – is shifting. But is this change a threat, or a necessary evolution?
Over decades, the patient voice has journeyed from the paternalistic (“doctor knows best”) to involved stakeholder or consultant (the Patient and Public Involvement era). But that journey is not over; it’s clear things are still changing. The voice of the patient and carer is moving out of the margins and into the centre of power.
Patient voice is changing: From consultation to authority
The past year has certainly delivered a flurry of contradictory announcements regarding patient and carer voice, forcing us all to pause and take stock.
- The reorganisation risk: The abolition of Healthwatch, the threat to Integrated Care Board’s convening role, and the potential removal of Foundation Trust governors represent lost opportunities to incorporate vital patient views.
- The power shift: Simultaneously, we’re witnessing a quiet revolution at the frontline evidenced by new Lived Experience Directors, the embedding of paid Peer Support Workers into frontline teams, and provider payments influenced by patient feedback.
So, are opportunities being lost or are we seeing a transformation into something that has more weight? It seems the patient voice is getting more powerful as it moves into more influential, paid and authoritative positions within the system.
Technology demands true partnership
As a technology provider, we believe bringing together all stakeholders is a key part of responsible technology development. Lived experience isn’t just the right thing to incorporate; it’s the essential ingredient that makes our products and services better.
Trust, as we all know, isn't bought; it’s earned through every conversation. We dedicate time and resources to create safe spaces to ensure we get honest, unvarnished views and constructive challenges in all that we do. It’s only by gaining that trust that we create the environment for the conversations critical to progress.
But here’s the catch: those providing the feedback don’t always agree. People have different experiences, concerns, and perspectives. So, what do you do when clinicians and patients tell us they want different or even contradictory things?
The answer is to bring people together. Only by sharing all views openly can we gain a better appreciation of wishes and concerns and anchor our understanding in real-world experience. From there, we can look for areas of common ground and compromise – and we’ve found lots.
Case study: Data – a shared journey
In our latest co-production session, we brought together frontline clinicians and lived experience experts to look at how data collected by our platform (e.g. vital signs, activity, and sleep) could positively support both staff and patients.
We know patients and carers often value more information, more data, to actively partner in their care. The NHS App expansion is clearly driven by this appetite. But providing more information can also bring risks: clinical data can be misinterpreted, lack the context for implications or simply give rise to unfounded concerns.
Our session helped us develop a shared understanding of where data provides the most value, identify the key concerns at each stage of the patient journey, and start, together, to develop solutions that address these. We’ve not finished the work. It’s an ongoing process. But the right conversation is well progressed.
In summary: The three shifts we’re seeing
Here are the three shifts that summarise where we are now and where we’re going:
1. The patient role is moving from consultant to co-producer
The lived experience role is transitioning from peripheral consultation (the 'nice-to-have') to being embedded and paid in senior and frontline positions, demanding more authority and accountability from the system.
2. Independence is being replaced by integration
While the proposed abolition of independent statutory voices like Healthwatch creates legitimate concern, the trend is toward integrating the patient voice into the delivery structure, making service improvement and design inseparable from user feedback.
3. Stakeholders are working together to find joint solutions
When opinions differ (patient wants data access; clinician fears misinterpretation), the solution isn't to filter or dismiss. It’s to bring everyone to the table to share, challenge, and co-create a solution that works for all.
Responsible technology development encompasses a lot, and for us, the patient and carer voice is a vital ingredient. It's much more than “patient and public involvement”. It's "Welcome to the drawing board”.
References:
Open letter on the future of Healthwatch
Chair lambasts ‘regrettable’ plans to remove FT governors | News | Health Service Journal
NHS App overhaul will break down barriers to healthcare and reduce inequalities - GOV.UK.
Fit for the Future: The 10 Year Health Plan for England - GOV.UK
