The art of involving people
in health innovation
Lessons and tips from the frontline
“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
Guy’s and St Thomas’ Charity The art of involving people in health innovation
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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.
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 learned that good involvement is so
important that it can be the key to success
or failure of a health project.
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.
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Experts are everywhere – listen intently
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.
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.”
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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
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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.
>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.”
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Balance leadership with sharing power
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
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 selfmanagement. 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 evidencebased, high impact initiatives would best improve
health outcomes, patient and staff experience
and also control costs?” By the third session,
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“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?’”
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
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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.
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Go to where people are and use
a shared language
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.
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.
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“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.”
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
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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.
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Involve at all stages – think ‘who’, ‘how’
and ‘when’
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.
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.
“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.”
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 preoperative 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
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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.
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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.”
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Build time and resources on all sides
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.
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
“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.”
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
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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,
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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
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.”
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Visual from ‘The art of involving in health innovation’ seminar, June 2016.
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