1. experience matters
how you can
mobilise the health
service’s most
valuable resource
A patient-led NHS is easy to say but hard to do.
thinkpublic adapt the best approaches from the design
sector, and combine them with cutting-edge thinking in
innovation to put the ideas and aspirations of policy-makers
into practice at the frontline. The results are positive, even
transformative. Read on to find out how we can help you
improve your service too...
social innovation and design

3. A National Priority
Improving the experience of people who ‘The compassion, dignity
use the NHS is a national priority. The and respect with which
Darzi Review identified understanding and patients are treated...
learning from the patient experience as one can only be improved
of three key steps towards the ultimate goal by analysing and
of improving the quality of care offered by understanding patient
the NHS. satisfaction with their own
experiences.’
The case for improving patients’ Department of Health (2008)
experiences is justified in three ways: High Quality Care for All (Darzi Review).
1. the moral imperative to protect people
when they are at their most vulnerable ‘The goal of improving
2. the clinical case, which shows that experience is... justified
patients who feel informed, relaxed and clinically and therefore in
cared for heal faster terms of value for money.’
3. the business case, as patient choice The Kings Fund (2008)
Seeing the person in the patient
begins to permeate through the NHS
So far, policy-makers have sought to create ‘Being asked to choose from
a “patient-led NHS” through surveying and a menu of options, none
acting on patient opinion, through getting of which appear to reflect
patients involved in formal accountability your needs... can be as
structures within the NHS, and through disengaging and frustrating
gradually introducing choice into NHS as a situation where there is
services, mimicking the market in order to no choice at all.’
Demos (2006)
allow patients to “vote with their feet”. But The Journey to the Interface
thinkers at the vanguard of public service
reform know this is not enough.
These thinkers also point out that putting ‘The rhetoric of user-led
patients at the heart of the NHS risks public services put forward
further alienating frontline staff already by this government risks
disempowered by a target-driven culture. As polarising professional and
Sir Nigel Crisp stated in 2005, “a patient-led user empowerment as if it
NHS is easy to say but hard to do”. were a zero-sum game.’
Demos (2006)
The Journey to the Interface

4. We understand that improving public service isn’t just
about listening to service users, or asking them to sit on
committees. It’s about empowering people to improve the
services they use, and to act for themselves.
So we were delighted when the NHS Institute of Innovation
and Improvement asked us to put our convictions to the
test. The experiment took place at Luton and Dunstable
Hospital with users and staff at the Head and Neck Cancer
Service.
Over the course of twelve months, thinkpublic initiated
the UK’s first ever, co-produced, “experience-based
design” project in the NHS. Combining radical thinking
in commercial and social innovation with seasoned
techniques from the world of design, we put together
a methodology that would get the best results from
patients and staff. Then we stepped back and let
people do the improving for themselves.
Over the course
of twelve months,
thinkpublic initiated
thinkpublic needed everyone at the the UK’s first ever,
Head and Neck Cancer Service to be co-produced,
enthusiastic about experience-based “experience-based
design. We feared that past “patient design” project in
engagement” exercises could have left the NHS.
patients cynical about getting involved.
And we wanted to reassure staff that
the project would not simply be about
blame and finger-pointing. The team
branded the project in collaboration with
patients and staff, then created posters
and newspapers to enhance its presence
in the clinic. We gave staff and patients
tools to create photo and video journals
showing their personal experience of the
service. We ensured participation from
senior clinicians and ward nurses, and
reinforced the project’s ties within the
management structure of the hospital.

5. Next, thinkpublic filmed interviews with staff and
patients, asking them to tell their story. Frontline
staff initially feared the presence of cameras in
the hospital, but when they saw how positively the
patients reacted to being on camera, they relaxed.
We gathered over 30 hours of footage of patients
and staff telling their story, then edited this to create
a 30 minute film. The film was shown to groups of
patients and staff in two initial, separate meetings,
designed to lay the groundwork for the next, and
most important, stage in the process.
We brought staff and patients together, involving
them in activities designed to give them a deep
insight into each others’ experiences of the Head
and Neck Cancer Service, and the confidence to
work together. Using techniques developed in the
design and branding industries, we asked patients
to map, and then describe, emotional “touchpoints”
along their journey through the service. This helped
everybody to understand where priorities for
improving the experience lay and gave everyone
an opportunity to vote on priorities.
Staff and patients immediately felt ownership of
the priorities for improvement because they had
identified them themselves. They also felt confident
that they could work together. Away from their
everyday roles as carer and cared-for, they began
to see each other as equals, with a shared goal of
improving the Head and Neck Cancer Service, and
unique insights that would help them achieve that
goal. They organised themselves into working
groups, each tasked with taking on one of the
priorities. thinkpublic provided tools to help these
working groups function productively, but it was
here that we withdrew from direct involvement in
the process. That’s because we knew change had
been put into the hands of the experts.

6. What happened next
The project resulted in 43 separate
improvements to the Head and Neck Cancer
Service, improvements affecting efficiency,
patient safety, and the overall experience of
the service. All of the improvements were
low or zero-cost, despite the fact that no
budget limits had been set. Many of the
improvements have since been adopted by
other services at Luton and Dunstable.
Most importantly, the project fostered a new,
collaborative relationship between frontline
staff and patients, one focussed on the
individual human dignity of service users.
Staff felt remotivated to do their jobs well,
and patients felt empowered – some even
spoke of the project’s therapeutic effect.
This relationship stands in contrast to other
attempts to empower and involve patients
in a meaningful way.
The NHS Institute for Innovation and
“It surprised me how committed
Improvement were really pleased
they are. They are always at
with the results, and thinkpublic were
meetings, always on time.
engaged to produce guidance and tools
Their commitment has really
for other NHS services who want to try
blown me away because I know
out experience-based design.
normally when you have got
patient groups, sometimes you’ll
The NHS Institute’s Experience
have four, next time you’ve got
Based Design Approach toolkit was
one and then it is a bit ad hoc
officially launched in 2009. We hope
but this time they have been
that services across the UK will now
really committed and I would
take the opportunity to improve their
praise them for that.”
user experience by putting their most
Support Staff member,
valuable resource – the patients that Luton and Dunstable Head and Neck Cancer Service
they serve – in control of driving service
improvement.

7. find out more:
To find out how thinkpublic can Download the Toolkit
help you capture, understand Download the experience-based
and use patient experience to design toolkit from the NHS
improve health services contact: Institute website:
http://tinyurl.com/nhsinstitute
thinkpublic
5 Calvert Avenue Read the Demos Case Study
London E2 7JP Read a case study of this project,
produced by the Demos think tank:
0207 033 9978 http://www.demos.
deborah.szebeko@thinkpublic.com co.uk/publications/
www.thinkpublic.com thejourneytotheinterface