The art of involving people in health innovationLessons and tips from the frontline

2Guy’s and St Thomas’ Charity The art of involving people in health innovation

“Our approach sees citizens as the makers of their own health and wellbeing, with

services in support. It’s not just about their cooperation or participation. It’s about feeling

in control, being listened to, and about self-management. Top down implementation

won’t achieve that transformation.”

Merav Dover, Southwark and Lambeth Integrated Care

3Guy’s and St Thomas’ Charity The art of involving people in health innovation

Through our work backing health innovation, we have looked at how best to involve professionals, people who use health services and the wider public in developing and delivering new health projects.

Harnessing all the resources available for health improvement is essential in this period of constrained finance and demands for cost-effectiveness. This means using the knowledge of everyone concerned, first to understand the problem and, second, to identify and implement solutions.

This paper is based on interviews with local health innovators behind some of the projects we have funded in recent years. It is grounded in local experience and builds on existing literature.

We’ve seen that complex systems and organisational structures can make it difficult to engage with all relevant colleagues. True collaboration with the public, based on equality and shared power, is also challenging. We also heard how poor involvement can lead to ideas and projects developing in a vacuum, with little input from those who will deliver or benefit from them. This can limit the chances for innovations to be embraced and sustained.

Crucially, we’ve learned that good involvement is so important that it can bethe key to success or failure of a health project.

This paper shares some of our learning around successful co-design and co-production in health. We don’t have all the answers, but hope that our suggested working principles, tips and stories can help those driving change in health.

At Guy’s and St Thomas’ Charity we support new ideas that tackle major health and care challenges in the London boroughs of Lambeth and Southwark.

We’ve learned that good involvement is so important that it can be the key to success

or failure of a health project.

4Guy’s and St Thomas’ Charity The art of involving people in health innovation

Story

How do you transform poor mental health for people who have no trust in the system or faith in local services? Harness their expertise, say Sally Zlotowitz and Tasir Joseph

We work with young people who are affected by gangs, sometimes committing violent crimes. Many have deteriorating mental health from living in such difficult conditions – a melting pot of poverty, exclusion, violence, stigma, drugs, struggling communities, family difficulties and peer conflict. They are among the 5% that commit 50% of youth crime and are out of touch with services. We offer them the chance to create and lead activities that they want to do – be it setting up a boxing club or working in a music studio.

Our team of mental health professionals and experts-by-experience work with them on these projects, helping them to develop leadership and job skills and build trusting relationships with us. Young people also participate in “street therapy”. That’s where our mental health professionals work with them while they go about their lives. It might be travelling to a court appearance or while they are in the gym.

“We harness the expertise that springs from their lived experience as young men, in their communities, on the street.”

Experts are everywhere, and it’s important to pay close attention – whether they are citizens or professionals – when they talk about their personal insights and what affects them and their work. They often understand the real nature of the problem at hand, so listen empathetically to their lived experiences, value what they are already doing and be truly open to their ideas. Believe in the power of equal relationships and abandon preconceived power hierarchies. You’ll create trust, mutual respect and, through that, solutions that couldn’t have been built alone.

Experts are everywhere – listen intently

5Guy’s and St Thomas’ Charity The art of involving people in health innovation

> Listen deeply. Try to set aside any answers you might already think you have and, instead, listen empathetically, placing yourself as much as possible in the same place as the person speaking.

> Find experts in unlikely places. They are not necessarily people holding senior positions. For example, administrators or receptionists are very important for understanding relationships between professionals and citizens and ensuring good communication during a project.

> Don’t just read up about needs – ask people. Sometimes, existing research does not answer all the right questions. Suzanne Jolley, whose project supports carers promoting recovery from psychosis, explains: “The evidence base was mainly about helping with ongoing caring situations. But the people we spoke to were often coping with people in crisis, so, after talking with them, we refocussed a lot of our service around crisis planning and management.”

> Be open to local experts that can help you deliver. Carl Dennis, from The Reader Organisation, recognised that local experts could also help to deliver his project and get more people with mental health issues to join reading groups: “We ran into trouble recruiting in surgeries and hospital wards. Rather than hitting our heads against a brick wall, we partnered with organisations such as the Guy’s and St Thomas’ Voluntary Services and SLAM Recovery College that work successfully in those settings. That’s really helped us solve the problem.”

Our work starts by asking these young people for their help, rather than offering our help. That builds trust. We treat them as experts, placing them at the heart of the design and delivery of services. We move from seeing them as the object of our care and make them architects of their own support.

They are an early reality check on any initiative: we harness the expertise that springs from their lived experience as young men, in their communities, on the street to learn what would work for them and their peers. Then we rethink our NHS practice.

This co-production is not necessarily efficient in the traditional sense of the word. It takes a lot longer

because people come with different experiences, not standard job training. It’s more meaningful but slower, as trust takes time to build. It helps to build the capacity of the community, so the process is, in reality, also a form of prevention work.

It works, cutting serious youth violence and reoffending. It gets young people engaged in training, education and/or employment. It improves their mental health by connecting them with existing services and resources.

Dr Sally Zlotowitz is Clinical Psychologist and Acting Clinical Director at MAC-UK and Tasir Joseph is a youth trainer at MAC-UK, a charity which aims to transform mental health services for excluded young people.

Top Tips

6Guy’s and St Thomas’ Charity The art of involving people in health innovation

We know integration is working because of William. At 79, and after numerous visits to hospital with painful catheter problems, William now has an individual care plan. That should prevent his frequent catheter blockages and minimise his A&E attendances. Until recently, most local people over 65, such as William, had no preventative or co-ordinated health plan, resulting in high levels of demand for hospital and institutional care. That’s changing now - emergency admissions have stabilised here, though they’re still rising across London.

Southwark and Lambeth Integrated Care (SLIC) started out in 2012 when system leaders came together and set out a trailblazing vision of integration. They mobilised £39.7m for a four-year programme to develop and test new models of care. Our success after four years has required us to admit our initial mistakes. Impatient to make change, not enough time was spent on some fundamentals and corners were cut, particularly around building trust and engagement between staff, clinicians and citizens. Although the intention to work together was there, the execution was poor. This meant that, at the beginning, change was seen to be imposed from the top down, isolating key stakeholder groups. This was the very opposite of the partnership working and approach to change that we have since adopted.

We had to change for lots of reasons, but one in particular. Our approach sees citizens as the

makers of their own health and wellbeing, with services in support. It’s not just about their cooperation or participation. It’s about feeling in control, being listened to, and about self-management. Top down implementation won’t achieve that transformation.

The levels of disengagement and even anger were making change very difficult, so we went back to the beginning. We took a risk. We got over a 100 people together – lead citizens, clinicians and managers – for three large co-design events and asked: “Are we doing the right things and how should we change our plans? Which evidence-based, high impact initiatives would best improve health outcomes, patient and staff experience and also control costs?” By the third session,

Effective power-sharing requires great skill. It’s not about handing decision-making over to those who use services or to the wider public. Retaining good leadership is key to negotiating different views, maintaining direction and building consensus. It’s about being prepared to challenge and be challenged. You need to be humble, listen well and empower people to play their part fully. Be clear and open about the process and where responsibility lies. Remember that equality and empowerment don’t mean abdication of leadership.

Story

Leaders had to admit their mistakes and really share power to integrate health and social care in Southwark and Lambeth, explains Merav Dover

Balance leadership with sharing power

7Guy’s and St Thomas’ Charity The art of involving people in health innovation

we’d agreed on a new name for our original flagship intervention – “holistic assessments” – because citizens and social care told us “health assessments” wouldn’t work. “You have to ask us what’s important in our lives,” they said. And we recognised that one must involve the voluntary sector to support people with needs identified in holistic assessments.

We overhauled the governance, making sure citizens were in every key meeting. GPs took part in leadership training to strengthen their role. We recognised that levels of trust between stakeholders were poor and we designed processes that explicitly built trust between them. There were

two stages of engagement. First, agreeing the overall vision. Then, quite separately, there was co-designing the logistics. We’d fallen down on the second, lacking a change model and quality improvement framework. But we’ve greatly improved. A geriatrician who was part of these discussions told me recently: “People enter the room with a good idea of what to do, but they leave with a different view, having really listened and no-one says my idea is the thing we’re doing. It’s a hybrid – not a compromise – of what everyone brings in and things people didn’t think of.”

Merav Dover is the former Chief Officer of Southwark & Lambeth Integrated Care

> Transparency is as important as governance. Being open about everything, be it data or decisions, to all partners, professionals, service users and patients can feel dangerous. Yet it’s crucial to give out all the facts, and discuss feelings, even when they are uncomfortable, if you really want to build trust, tackle scepticism, learn and then move on.

> Support effective citizen participation. Merav Dover of SLIC suggests some approaches: “Offer citizens the chance to attend meetings in pairs so they are not overwhelmed by professionals. Support citizens before and after meetings in order to develop their skills and understanding. Assign a very senior figure to attend citizens’ meetings so those stakeholders feel engaged and able to challenge and be challenged. Make sure a proportion of citizen participants really represent their communities and co-design with those who have direct experience of the problem to be solved, such as living with a catheter.”

> Be prepared to tackle scepticism. Citizens can sometimes feel angry with the way they have been treated in the past – perhaps they have been “involved” before but seen nothing come of it. They need time to get it off their chests. But it’s important then to move from a blame narrative to an improvement narrative: sometimes those who are angry should be challenged to move forward, particularly if their language disrespects or discourages others.

> Keep the direction and make sense of progress. Co-production demands that leadership constantly works to make sense of findings and to build consensus and make hard choices, so that direction is not lost amid a range of differing views and evidence. You’ll need the skills to pull together all viewpoints in a cohesive way. That can mean, for example, assigning a lead executive to each stakeholder group to bring everything together.

“We took a risk. We brought over 100 people together – lead citizens, clinicians and managers – for three large co-design events and asked: ‘Are we doing the right things? How should we change our plans?’”

Top Tips

8Guy’s and St Thomas’ Charity The art of involving people in health innovation

Story

Alienation of some ethnic minorities from mental health services puts people at risk. Reach out, listen and talk in new, respectful ways, says Louisa Codjoe

Significant numbers of people from black, religious communities use church support as an alternative to mental health services – they’ll go to their pastor rather than the GP. But if a person with psychosis, for example, is not treated speedily, their chances of recovery diminish. So we wanted to understand how traditional, religious and complementary approaches tackle such issues.

You have to go to where people are, at a time that suits them, not ask them to come to you. We were asking for help from people we didn’t know, who had kids, dinner and work to manage. That demanded time and flexibility from researchers and as little imposition as possible – so we stayed behind during social time after services. We started by asking them what they do, what the church does, meeting pastors and going to the service.

Building trust with the church pastors was vital. That took time. It wasn’t about mental health services saying you must do this and that. It was the other way around. What could mental health services learn from faith communities that offer so much support to people that is often undervalued? I’d say: “I work for mental health services and I want to learn from you, so I understand better and we can do it better together.” Respect was vital, ensuring that people value what they are already doing. You mustn’t, when offering something new, devalue what’s already there.

Face-to-face, unrushed time is vital with people in their own communities. There is no such thing as “hard to reach” – you just have to think creatively about how to reach out to those people and understand it takes time. Show that you are there to really understand and value who they are and what they do. Demonstrate why you are there and what you can achieve together. Think about how to develop a common language that makes sense to all.

Go to where people are and use a shared language

9Guy’s and St Thomas’ Charity The art of involving people in health innovation

There’s no room for tokenism. I was looking for equity, for shared, understandable language, to remove any notion that the mental health side is best. My task was to identify and support champions from faith communities that mental health teams can go to for advice.

By going to where people are, our programme has been created by the people experiencing the need, rather than by researchers. That makes our goals more achievable. Now, we want to run a mental health awareness course for people from black majority churches so mental health professionals can ask them for advice on spiritual and religious

issues with clients. We want the course to be accredited by King’s College London, to make it real and valued.

Many people want to be skilled up and supported, to understand the network of care and skill beyond their church that they can draw on. They’ll say: “I didn’t realise that’s depression. I can’t believe I have been dealing with this and I need to know more.”

Dr Louisa Codjoe is a clinical psychologist, mental health services researcher and works for South London and Maudsley NHS Foundation Trust.

> Spend time with people. It might mean regularly attending clinical audit meetings or a children’s centre, or sitting in someone’s kitchen once a week. Face to face contact shows you are willing to understand people and keen to hear their stories. For example, Knee High Design Challenge, which supports innovative projects around the health and wellbeing of the under-fives, committed to a process of sitting within families and in their communities, talking for 6 to 9 months before proposing any projects.

> Plan the initial contact well. It is worth thinking about every aspect of the first conversation. Sally Zlotowitz of MAC-UK says about approaching young people on the street: “Before I go up to someone, I think about what I am wearing, my body language, my script, my openness, everything that might help put the person at ease and establish trust.” Tasir Joseph, a former service user and now a MAC-UK youth trainer, recalls his first meeting with a MAC-UK staff member: “I trusted them because I got a genuine vibe from them,” he says.

> Ask for help with your approach. Sometimes professionals can’t fully bridge the gap between themselves and those in need. That’s why it’s important to find and invest in local people who have feet in both worlds. Sally Zlotowitz of MAC-UK explains: “We try to find someone safe that people can look up to and trust - someone like them and then to offer them training.”

> Co-create a language. It’s important that professionals and citizens understand each other’s language. But translating and interpreting can leave power imbalances in place, and reinforce feelings of “them” and “us”. Early discussions with stakeholders should help co-create a fresh way of describing things, common to everyone and understandable by all.

“A lot of work involves going to and speaking to people not about research but about what they do, what the church does

and meeting the pastor.”

Top Tips

10Guy’s and St Thomas’ Charity The art of involving people in health innovation

Older vascular surgical patients are often frail with other health problems and are at risk of cognitive difficulties after operations. This can lead to slow recovery and longer hospital stays. Yet routine assessments before operations don’t always look for, or proactively deal with, such problems.

At Guy’s and St Thomas’ NHS Foundation Trust, we’ve changed this approach in favour of pre-operative comprehensive geriatric assessment. Part of the key to the success of this project has been involving everyone at every stage. We knew health professionals might feel concerned that our proposal could complicate the surgical process, so we asked patients how they had benefited from similar assessment innovations and brought their voices to clinical staff. Patients also told us exactly how they wanted the study organised, which helps explain why people were keen to sign up to the project and why nobody dropped out.

We involved all stakeholders (surgeons, anaesthetists, geriatricians, nurses, therapists, hospital administrative staff) from start to finish - project design, project

running and dissemination of results. So, for example, the admissions staff – who notify patients of the date for surgery – were on board and could reassure patients. The surgeons’ backing also really helped patient recruitment. Working with our surgical colleagues, we attended every vascular clinic to enrol interested volunteers. So feedback was easy and people saw us doing what we had discussed. All

Story

Involving professionals and patients at every stage of designing and implementing new care pathways before operations has transformed outcomes for older surgical patients, explains Jude Partridge.

Consider early on the best ways to involve professionals, service users and/or the wider public throughout. They should be part of scoping, designing, delivering, evaluating, sustaining and sharing the results. There’s no one-size-fits-all for good involvement. Sometimes, clever governance, committees and formal meetings aren’t the best way to involve everyone. Creative, open thinking will reveal routes to meaningful involvement.

“We involved surgeons, anaesthetists, geriatricians, nurses, therapists, hospital administrative staff and others from start to finish.

It was particularly important that the admissions staff - who notify patients of the date for surgery - were on board.”

Involve at all stages – think ‘who’, ‘how’ and ‘when’

11Guy’s and St Thomas’ Charity The art of involving people in health innovation

this involvement helped to translate the results of a successful trial into substantive services. Our study showed that patients who were assessed before their operation using comprehensive geriatric assessment and optimisation spent significantly less time in hospital, probably because they had fewer medical complications and their discharge was managed more smoothly. For example, an older man was in poor shape after a long hospitalisation in another trust and, due to reluctance about managing at home, was sleeping on a family member’s sofa. Our team assessed him comprehensively before his kidney surgery. This involved heart tests and medication changes, treatment for anaemia, identification of some memory impairment plus involvement of an occupational therapist and social worker. The team facilitated the move back to his own home, with equipment and carers in place.

This was all done before surgery, so he attended for the operation in a planned way, optimised from a medical viewpoint and knowing he would be safe at home after he left hospital.

Good stakeholder engagement has helped us maintain patient liaison groups that advise us on shaping further changes to clinical services. Meanwhile the clinicians involved are co-authors on our academic papers and are partners in further grant applications.

Thanks to such fruitful collaboration, we have been able to establish quickly a comprehensive assessment and preparation service that translates the study’s benefits to more older patients undergoing surgery. This success is down to genuine co-production.Jude Partridge is a consultant physician for Proactive Care of Older People Undergoing Surgery (POPS) at Guy’s and St Thomas’ NHS Foundation Trust

> Use lateral thinkers to bring people together. Lateral thinkers, such as artists and those in creative disciplines, are often good at slowing down the pace, reflecting, observing, making time and space to encourage thinking differently. Consider using them in building co-production skills and mutual trust between diverse, possibly alienated, stakeholders.

> Don’t be afraid to start again. It’s easy to get the start wrong, rushing into action, instead of building trust and understanding. If people aren’t working together and it’s going pear-shaped, go back to the beginning, bring people together to talk and listen to each other.

> Getting everyone into the same room is not always best. “Sometimes, it can be better focussing on individuals than getting everyone in the room at once. When things are fraught and carers are upset, putting everyone together can be quite volatile. Our project, which supports carers of people with psychosis, favoured a go-between model rather than multi-stakeholder groups working it all out together”, says Suzanne Jolley.

> Retain interest by making change tangible. Keeping people involved requires change that feels relevant to them. Merav Dover, Chief Officer of SLIC, explained: “We encouraged GPs to write postcards from the future, a note to another GP in five years’ time detailing all the changes that had happened in that period. The exercise really helped them visualise what they wanted to happen.”

> Don’t expect the same people to stay involved throughout. Haidee Bell of Knee High Design Challenge says: “If someone has an agenda, goal or skill, they will naturally want to be involved throughout. But some will come in and then disappear. That’s fine. You don’t have to keep the same people. But if you lose some, it’s vital to recruit replacements.”

Top Tips

12Guy’s and St Thomas’ Charity The art of involving people in health innovation

Story

Nine months exploring the lived experience of families – and more time backing innovative solutions – was vital for supporting the physical development, health and creative stimulation of local children, explains Haidee Bell

Change can be built only on a genuine understanding of the lived experience of those you want to help. That’s why we spent months chatting with families in Southwark and Lambeth about what matters to them. We wanted to discover ways to improve the opportunities for children under five, a quarter of whom live in poverty. So we visited families at home, went to the children’s centre and the park or simply observed them. In the process, we shed any presumptions about what they might need.

Putting ourselves in their shoes in this unhurried, unassuming way highlighted three particular challenges for families where innovative, bottom-up initiatives could provide solutions. First was accessing local activities and networks around them. Second was enjoying creative outdoor play. Third was making home a less stressful place.

So the Knee High Design Challenge issued a call for solutions, working with an initial set of 25 teams, after over 200 responses. We gave all 25 teams clear, concrete support and eventually funnelled them

Calculate how long it might take to build trust and reciprocal relationships, so no-one feels things are being “done” to them. Then double the time. Be ready for early resistance – people might be completely disengaged by past bad experiences. It needs to feel different and not tokenistic. Consider the need to buy out professionals’ time and invest in training to equip and empower everyone with the skills and confidence to become powerfully involved.

Build time and resources on all sides

“The building blocks are time and inclusion. We were present in people’s lives. We weren’t looking for instant successful projects,

the ones with big narratives and compelling metrics.”

13Guy’s and St Thomas’ Charity The art of involving people in health innovation

down to a final, heavily scrutinised three. As a result, we attracted ideas from a much wider range of people than it is usual for health projects. The final three are Creative Homes (which tackles everyday stresses at home), KidsConnect (an app connecting parents with local activities) and Pop up Parks (which transforms underused urban places into playful outdoors environments for children). Together, they’ve achieved measurable cuts in parental stress, more time spent in creative routines at home and more outdoor play.

The building blocks in all of this are time and inclusion. We were present in people’s lives, even setting up a “pop up” shop in a neighbourhood centre. So no-one was “hard to reach”. We weren’t looking for instant successful projects, the ones with big narratives and compelling metrics. We constantly thought about networking the networks,

helping projects gain strength, understanding their weaknesses and how to address them, even if they didn’t make the final cut.

There’s no one-size-fits-all model. Pop up Parks delivered lots of park events in different locations. Creative Homes worked intensively with fewer families. They were led by the people they aimed to serve, by their needs, experiences and motivations. It’s a model for public service agencies to act as facilitators rather than central providers.

Haidee Bell is a lead for the Knee High Design Challenge, a joint programme between Design Council and Lambeth and Southwark councils

Top Tips

> Invest in professionals’ time. Nicola Robinson, Professor of Traditional Chinese Medicine, explains: “One of the problems for our study which tried to integrate and evaluate the option of having acupuncture for amputees was that the professionals were as cooperative as they could be within the constraints of their day-to-day clinical practice, but this was one more job for them to do and sometimes may have been too busy. They were not paid to take part. Some other projects have found it helps to have money to backfill clinical time.”

> Build in resources to address skills gaps. If you want to transform care, you have to invest in people’s skills and in developing leadership across all stakeholders. This may be by supporting the public or by developing professionals to play a meaningful role in health innovation.

> Be prepared for slower delivery. The Reader Organisation created a “reading for patients” programme, which involved lots of partnering and engaging with volunteers that caused some delays. Carl Dennis explains the potential effects: “There are implications for relying on other people to keep their side of the bargain. If someone falls behind on delivery, it can slow everything down. The upside is that, if everything works well, it allows us to do more for less.”

> Use existing networks if fit for purpose. It’s tempting, but often a mistake, to set up new networks or groups to involve. Matthew Bolton, of Parents and Communities Together, warns: “It’s not helpful setting up a new network every time NHS professionals want to talk to people. It’s expensive. People will not show up in sufficient numbers. You can get a skewed sample. Focus on groups that already exist – in schools, churches or informal groups that already meet.”

Visual from ‘The art of involving in health innovation’ seminar, June 2016.

14Guy’s and St Thomas’ Charity The art of involving people in health innovation

Guy’s and St Thomas’ Charity Francis House 9 King’s Head Yard London SE1 1NA

Tel: +44 (0)20 7089 4550 Fax: +44 (0)20 7089 4585

Email: info@gsttcharity.org.uk

www.gsttcharity.org.uk @GSTTCharity