One of the things I have learned from working in patient and public involvement for a very long time is remarkably simple.
People knew things.
Patients knew when something about their care didn't feel right. Families knew when the reassuring explanation they were being given didn't match what they were seeing.
People experiencing services could sometimes see patterns, risks and problems long before the organisations responsible for those services recognised them.
The challenge was rarely that there was no knowledge available. The challenge was recognising it as knowledge. That distinction has stayed with me throughout my career.
Different circumstances. Different people. Different parts of the health system.
But again and again, people knew things.
Sometimes what they knew sat uncomfortably alongside the official version of events. Sometimes one person's experience only revealed its significance when connected with the experiences of others. And sometimes the information was there, but organisations struggled to understand what it meant or what to do with it.
That has shaped how I think about patient and carer experience, and why I think we need to get much more serious about developing the knowledge and skills to work with it well.
It is also why I am so pleased that this November we are launching a new postgraduate course at Brighton and Sussex Medical School dedicated to doing exactly that.
But first, there is a bigger question about how health and care uses what people know.
We don't have a shortage of feedback
Health and care organisations now collect an extraordinary amount of information about people's experiences.
Surveys. Complaints. PALS contacts. Patient stories. Engagement exercises. Focus groups. Online feedback. Participation programmes. Friends and Family Test data.
We are certainly not short of people asking people things.
But collecting experience isn't the same as understanding it. And understanding it isn't the same as acting on it.
Perhaps we need to think differently about what patient and carer experience actually gives us.
Clinical evidence is one way of knowing about the quality of care. Performance information is another. Population data can tell us something else again.
Lived experience gives us access to knowledge those other sources cannot necessarily provide. It can tell us what care feels like when it reaches somebody. It can reveal the consequences of decisions made elsewhere in a system. It can expose the gap between the service we think we are providing and the one somebody actually experiences.
These different ways of knowing shouldn't be competing with each other. The skill is in knowing what each can tell us, what each might miss and what to do when they don't neatly agree.
Quality isn't only measured. It is experienced, observed, interpreted and lived.
Perhaps we don't always need more information??
A patient story at the beginning of a Board meeting can be powerful. But its real value isn't simply that everyone listened respectfully for ten minutes. It is what happens to that knowledge when the meeting moves on. What weight does it carry then?
Perhaps the answer isn't always to collect more feedback. Sometimes we need to become much more intelligent about what we already know. To notice the anomaly. To see beyond the average. To recognise whose experience might be missing. To understand when one person's story is simply one person's story and when it might be a signal that deserves further enquiry.
An organisation can have excellent overall patient experience scores while a particular group of people is experiencing something quite different. Equally, one powerful story can command enormous attention without necessarily being representative of wider experience.
Working well with patient experience requires us to hold both of those things at once.
That requires judgement, not just data collection.
And it requires relationships. Some knowledge emerges through conversation. Some requires trust. Some becomes visible only through sustained relationships with communities.
Relationships give organisations access to knowledge they cannot generate for themselves.
So how do we get better at this?
This November, along with Jane Lodge and Miles Sibley I am running Patient & Carer Experience: Delivering Safe, Equitable, High Quality Care through Brighton and Sussex Medical School.
I'm particularly excited about it because I think it fills a gap that has existed for a long time.
There is training available in methods of engagement and involvement, complaints handling, improvement and communication. But there are surprisingly few opportunities to step back and study patient and carer experience itself. To think about what kind of knowledge experience gives us. How we hear it well. How we make sense of it alongside other forms of knowledge. And, most importantly, how we use it to influence improvement.
There is a reason we have located this within a university and pitched it at postgraduate level. We aren't teaching a toolkit. We want people to think.
Working seriously with patient and carer experience is intellectually and practically demanding. It requires us to think about evidence and interpretation, inequalities and whose experiences are visible, relationships and trust, power and whose knowledge gets taken seriously, and ultimately about improvement and change.
Across nine hours of live teaching, we move through three connected ideas: hearing, understanding and acting on patient and carer experience.
And we spend time on the bit that can easily get missed: what you actually do with all of this. How does information become insight? How does insight become influence? How does influence become improvement? And how do we know whether anything has actually changed for people?
Learning with and from each other
The course is online, but each cohort is deliberately limited to 20 people. Across all nine hours, participants work directly with a teaching team with an exceptional depth of practical experience in this field. But that isn't the only expertise that matters.
We want a multidisciplinary cohort. Clinicians alongside non clinicians. People working in patient experience alongside people working in improvement, leadership, commissioning and other parts of health and care. Because everyone arrives knowing something.
Peer learning is a significant part of the course. People have the opportunity to test ideas against their own experience, hear how others see the same problem and consider how the learning applies in their own workplace.
Taking the field seriously
For years, people working with patient and carer experience have been expected to handle extraordinarily complex knowledge.
They may be working with experiences of harm, poor care or inequality. Trying to identify patterns across hundreds of pieces of feedback. Challenging established organisational narratives. Or trying to persuade colleagues that something deserves attention when the traditional performance indicators are saying everything is fine. Yet there has never really been an obvious formal learning pathway for people who want to develop expertise in this field.
I think we should change that!
This course gives people the opportunity to undertake postgraduate level learning about patient and carer experience within a university setting, apply it directly to their work and receive certification from Brighton and Sussex Medical School. For me, that says something important. This is knowledge worth studying. And this is expertise worth developing.
Because people still know things. Our job is to get better at recognising what people know, understanding what it might be telling us, connecting it with other ways of knowing and having the skills, curiosity and influence to act on it.
Ultimately, this isn't about better patient experience data. It is about safer care, better experiences and better outcomes.
Don't just ask people what they think. Learn how to use what they know.
For more information, drop me a line, at hello@jessiecunnett.com visit the course web pages and hopefully see you there!!