Long Read

Transformative, not tokenistic: the patient voice in integrated care systems

Exploring how the patient voice can embedded into system working in a meaningful and transformative way.

28 July 2023

When Helen Hassell reveals the main motivation for getting involved in her local integrated care system, she can’t help but let out a wry chuckle. “I will be really honest,” she says. “I joined it to be a pain.” As mum to a son with complex physical and learning disability needs, Helen has spent many years trying to use the lived experience of her family to advocate for better care for all.

But she says traditional patient involvement too often felt to her like a frustrating and dispiriting experience, and one which felt tokenistic rather than transformative. “One of the biggest challenges I’ve had was getting our voices heard and making a difference.”

So when she became part of the co-production group at Nottingham and Nottinghamshire ICS, she did so with the intention of challenging what she feared would be another a tick-box exercise.

“I joined the ICS because the world had promised us so much over such a long period of time and they took our views, took our ideas and just ran with it, and that was it – we were then shelved and had no more use.

“So [with the ICS] I probably asked a couple of challenging questions and made a couple of push backs on a few things,” she says with tongue firmly in cheek. But she says the need to do so did not actually last very long.

“I'm delighted to say that over the first year, certainly over the first six months, that changed because there was a real buy-in from the system, to want to hear from people like me, to want to understand what it felt like on the ground.”

Listening and responding as partners

Leaders at every single one of the 42 integrated care systems (ICSs) in England will state they share that desire to listen to people from their communities. But how to ensure that the patient voice is truly embedded in this new way of working – how to avoid the sense of box ticking that Helen previously experienced – is an open and important question.

It is one we partnered with The King’s Fund to try to answer. In 2022, before ICSs became statutory organisations, we convened a webinar to discuss just how ICSs can work effectively with communities and truly listen to, and act on, the patient and service user voice.

Certainly there was a sense that the July 2022 creation of ICSs on a statutory footing offered a new opportunity to get this right. “I think what ICSs do is they allow us to look at the whole patient or service user pathway,” commented Frances Newell, NHS England’s head of engagement and communications for NHS transformation.

“It’s taking that really person-centred approach and looking at what happens to people between and across services, and how do we listen and respond to that as partners across health and care.”

She said the national body was seeking to ensure that each individual ICS did not have to entirely chart its own path on community engagement. “I’ve been working with integrated care systems and their predecessors to develop and support their work with people and communities since 2016, so it's been a bit of a journey.

“During that time, we’ve identified and we’ve shared and we’ve actively supported promising emerging practice in different areas – like Nottingham and Nottinghamshire; like citizens panels in Surrey Heartlands; like the fantastic network of engagement champions in Dorset. We've looked at deliberative engagement approaches in Gloucestershire and London; we’ve looked at system-level partnership with Healthwatch.”

That in turn, she said, fed into NHS England’s formal guidance on the subject (ICS implementation guidance on working with people and communities). It contains ten principles on how ICSs should work with people and communities, but Frances emphasised that “we don’t want to dictate exactly how they do this, because there's a lot of strength in variety”.

“The different systems have very different strengths, and very different footprints and contexts. But it’s important to set out high-level principles and expectations, and we've done our best to do that.”

Participation is a right

For leaders in North East London ICS, there is another central principle being layered on top of those ten: that involvement means participation, and that participation is a right.

“Participation is a resident’s or patient’s or service user’s or carer’s right because it’s their minds and their bodies,” said Marie Gabriel CBE, chair of the ICS and chair of the NHS Race and Health Observatory. “It's a right because it says so in the NHS Constitution. And it's a right because it’s their money that we are actually spending.”

Viewing patient involvement in this way, she suggested, addresses one of its traditional failings. “We believe that once we recognise our residents, our patients and service users as having rights, our perception of participation or engagement and involvement, and therefore the nature of the relationship we enter into with them, changes,” said Marie. “Because someone has a right to be in the room and that right brings power with it.”

And the lived experience experts on the panel argued that key to creating a strong patient voice in ICSs was valuing the contributions of members of the public. “As far as I'm concerned, I am not a free resource,” stressed Helen. “I am an unpaid carer, I have carer costs. So the bare minimum for me to do what I do is that somebody needs to pay those costs.

“If you want my skill set, you have to put money behind it. I'm not there to do a job, I'm not there to make money, but I am there to be valued. And you show me that you're valuing me by making sure that there aren't any barriers to my involvement and my participation.”

Practical support

Those potential barriers aren’t just monetary. Many of those with lived experience may also need support to most effectively share views and make a difference. In Nottingham and Nottinghamshire, that has been addressed through independent coaching.

As Helen put it: “Our system leaders at Nottingham and Nottinghamshire have seen what I can bring to the table, but also they've invested in me, they've trained me, they've upskilled me, and put me alongside others like me that are passionate about making a difference in our locality.”

Keymn Whervin has her own lived experience, having cared for her mum for two decades following a stroke. She’s now co-production manager at National Voices, a coalition of health and social care charities in England, and set up and leads the co-production group in Nottinghamshire of which Helen is a part.

“My role is to facilitate that group, and to build their knowledge, their skills, and their confidence in working alongside the Nottinghamshire ICS board and the personalised care team,” she explained during the webinar. “I basically headhunt for people with lived experience, that have got the right skills to be involved at a strategic level, and we get the buy-in from the senior leadership.”

The aim is to seek out people and help build mutually respectful and beneficial relationships between those with lived experience and senior leaders.

“We go out there and meet people where they're at, and bring them into the system, and support them so they can understand where their lived experience could help improvements in certain areas.

“What you find is when you have an external person [like me] that's got lived experience, facilitating the process with a board, it helps and supports those people with lived experience to be involved at that level,” she said. “So I act as the bridge, being that person who builds confidence with system leaders as well. So they can actually ask those questions and we can create a safe environment.”

Seeking out little-heard voices

The need to actively seek engagement, and voices that may not usually be heard, was a key theme to emerge during the webinar. Hannah Davies is chief executive of Healthwatch Leeds, working in a city in which a fifth of the population are living in poverty.

“We know that actually the essential voices that we need to be hearing are those people with the greatest health inequalities, that's where our focus needs to be. And actually traditional mechanisms, sometimes I've not heard those voices.”

Hannah and her colleagues aim to change that. One important mechanism of so doing is a programme called The Big Leeds Chat, through which “we’re not inviting people to come and talk to us, but actually going out to communities and listening to communities”.

Significantly, the people doing the listening have not been from the patient involvement team. “It was actually the decision makers, so it was the chief executive of the hospital, it was the chief executive of the mental health trust, it was a director of adult social care who go out to listen,” explained Hannah.

“One of our key reflections is that the closer you can get decision makers to real people, the more informed those decisions makers are. We could write 20 reports from a Healthwatch perspective on people's experiences, but one person's experience [when heard directly by a leader] can make such a difference.”

The next priority for the programme: ensuring that change is created as a result. There are plans to create a people experience insight hub, bringing together the themes heard during the listening exercise and aligning it to broader data.

“It’s good to be a city that wants to listen,” Hannah reflected. “But how are we acting on what people say? That’s our big theme for this year. People have consistently told us similar messages about their experiences, but how are we acting on that?”

Insight into action

This, suggested Dan Wellings, is absolutely central to ICSs getting patient engagement right. A senior fellow at The King’s Fund, Dan is one of the authors of the paper Understanding integration: how to listen to and learn from people in communities, which strongly emphasises the need to make engagement everyone’s business in the ICS, to turn data into action, and to report back on that action. Leadership will, he argued, be key to that happening.

“I would refer to [the example of] Donna Hall who, as chief executive of Wigan Council, absolutely set the tone for this has to be at the core of everything we do. [See box below.]

“Whereas sometimes I think this area of work in the past has almost felt like an appendix to organisations, it's felt like something that people do, but it's not at the heart of it. And too often there's exercises where people have said: ‘There's been a really good conversation’, and then there's very little that happens afterwards.

“It doesn't matter what you do [with listening exercises] if you don't do anything with what you learn,” he emphasised. “That feels absolutely fundamental to this.”

He did suggest that ICSs may be able to overcome previous challenges here, by virtue of their cross-organisational and sector nature. “I heard from a patient and public engagement lead an acute trust who'd done an exercise with the public and, actually, a lot of the feedback they got was around primary care and the lack of joined-up care between primary and acute. And we said: ‘Well, what did you do with that information?’ And they said: 'Well at the moment we don't have somewhere we can take that’.”

With ICSs, that should hopefully change. But even if it does, there will be a need for the data collected via listening exercises to be granted the same esteem and value as more traditional indicators.

“It feels like it's not on an equal footing with other information,” argued Dan. "The NHS often works on what it can measure, things like targets, you know, four hours, 18 weeks. I remember someone saying to me: ‘Have you got any of that soft data?’ And I think they meant that data from users. It's not placed on an equal footing and that has to change.”

Then, said Dan, is the challenge of showing precisely what impact this data has had. “I would say there's a really important role for regulators and people that are coming to look at [what] a system is doing to move away from asking ‘What did you do?’, [answer:] ‘We engaged with 2,000 people’ to ask a different question, which is: ‘And what did you do as a result of it? Can you show us examples where you have really changed what you're going to do, or you've acted in a different way, based on what you learned?’”

He continued: “I've never heard anyone say this isn't important. But I have seen it in the action sometimes afterwards. Particularly when people are looking up to regulators and national bodies, it makes it more difficult for them to look out to populations they serve. And that's a real challenge for regulation and national bodies in this area to really give people the permission and the freedom to act on what their population is telling them. And I think that's going to be absolutely key if we're going to get this right.”

For the fundamental conclusion of the webinar was the central importance of engaging patients and communities in the work of integrated care systems. “We recognise that we cannot succeed without our residents, service users and carers driving what we do,” concluded Marie.

“Without that, there is no way we’re going to successfully transform services, integrate care, reduce health inequalities, and be productive and sustainable.”

Top tips for amplifying and acting on the patient voice

A few central themes emerged from our webinar with The King’s Fund on embedding the patient voice in integrated care systems:

  1. Don’t wait for people to come to you – go to them. Working solely on the basis that patient involvement comes from volunteers is likely to limit the voices that are heard. Panellists spoke instead of the value of proactive conversations in the community; the sense of meeting people where they are. A linked point is the value of asking people how they want to be engaged with.
  2. Value those community members who offer their input. This is not only recognising that there should be a budget attached to patient involvement. It also means instituting coaching and training; removing as far as is possible any barriers to community members participating in healthcare design. In Nottingham and Nottinghamshire ICS, for instance, the co-production group is led by an independent facilitator who actively recruits a broad range of individuals to the group. She then supports them to effectively participate in the shaping of services, while also coaching system leaders to make the most of feedback.
  3. Be wary of silos. Too often, patient feedback has been collected in a way which focuses only on one domain of care. Yet commonly the most frustrating parts of the system for users are when different parts integrate – or fail to integrate – with one another. ICSs may afford a new opportunity to consider patient feedback across an entire pathway rather than in limited parts of it.
  4. Gather data, focused on outcomes, and prove you’ve done something differently because of feedback. Being able to say that thousands of people participated in a listening exercise is one thing. Being able to point to concrete examples of change that occurred because you listened to thousands of people is something quite different. Our panellists argued the latter is of crucial importance.

Further reading on these and other themes:

The Wigan Deal

“We need to operate completely differently, not just sit in our ivory towers and wait for people to come to us.” 

In considering best practice in public engagement, The Wigan Deal is frequently cited. Instituted by Professor Donna Hall during her time as chief executive of Wigan Council, the deal was designed as a social contract between citizens and local government. And it is widely considered to have transformed conversations with citizens.

In an episode of the Health on the Line podcast, Donna told NHS Confederation chief executive Matthew Taylor that the project was grounded in a recognition that “public services were no longer fit for purpose in their current form”.

“We knew that public services were broken. We just have these individual, unconnected service silos that don't support people to live their best lives, to focus on the strengths that they have as individuals and families.

“I think once you have that in your mind and you realise the lack of a connected strategy for local places, the only alternative is to create something different.”

When she joined Wigan Council, in 2009, it was actually already a high-performing organisation. “But it was quite paternalistic in the way that it worked with citizens. And we realised that we have to save around £160 million and we weren’t going to do that without completely rethinking our role in the local community.

“So we listened to citizens, we asked them what they wanted us to do, and we created The Wigan Deal. It was a partnership – it wasn’t about us coming in with new ideas and a new strategy.”

Indeed, part of the work has involved creating a community investment fund which is used to fund ideas from local residents.

“They came back with the most remarkable ideas – things that we would never, ever have imagined would be successful,” Donna explained. “So, things like men's walking football to tackle obesity, things like mental health support for young people using music therapy, things like a rugby memories group.

“Wigan is a big rugby town, so we didn't stigmatise it and call it a dementia support project, but we called it a rugby memories group, where Wigan Warriors would work with us to put on a support cafe, bring some of the old players and the new players to meet people with or without dementia, to build friendship groups and social networks.”

In other words: giving people what they wanted. “We need to turn ourselves inside out as NHS organisations and councils and we need to operate completely differently, not just sit in our ivory towers and wait for people to come to us,” Donna concluded. “We've got to go out to communities and find out what we need to do differently.