Improving healthcare through
the use of co-design
Hilary Boyd, Stephen McKernon,
Bernie Mullin, Andrew Old
Aim This paper describes how co-design
methods can be used to improve patient experiences and services within
healthcare organisations. Using the Patient Co-design of Breast Service Project
as an example, we describe how patient experiences were captured and understood,
the improvements made and implications for future work.
Method We used a six-step process:
engage, plan, explore, develop, decide and change. Tools and techniques employed
were based on service design approaches. These included patient journey mapping,
experience-based surveys and co-design workshops.
Results Information, communication,
navigation and co-ordination, and environment emerged as key themes for the
Breast Service. And as a result, a suite of improvements were made. Key
methodological learnings included using co-design alongside traditional quality
improvement methodologies, engaging with patients early, the importance of staff
buy-in and the necessity of trying things outside one’s comfort
Conclusion Use of co-design within the
Breast Service has resulted in tangible improvements and has demonstrated the
value of engaging patients and focussing on their experiences. It is recommended
that: evaluation phases are factored into future co-design work, further
research is conducted on sustainability and funding and support is given to
allow co-design to become more widespread throughout New Zealand.
Co-design challenges the existing quality improvement
paradigms commonly used in New Zealand hospitals in three major ways. Firstly,
it encourages patients to take an equal role in the review and development of
services. Secondly, it focuses strongly on designing services around patient
experiences.1 Thirdly, it uses techniques and
tools derived from service design—e.g. prototyping and storyboards, rather
than manufacturing environments as well as process maps and statistical process
Within a health context, co-design (also known as experience
based design or co-production) is “... a method of designing better
experiences for patients, carers and
staff”.4 It involves patients and staff
exploring the care pathway and the emotional journey patients experience along
it, capturing experiences, then working together to understand these experiences
and improve them.4
Co-design’s innovative way of actively involving
patients in healthcare design has been gaining traction overseas for a number of
years. Originally piloted in the Head and Neck Cancer Service in Luton and
Dunstable, UK, (in 2006) it has successfully spread to other parts of the UK and
Australia and more recently New Zealand.5 The
range of health services where co-design has been applied now includes head and
neck cancer,6 renal,
dementia,7 dietetic, orthopaedics, emergency
departments8,9, mental health and
The changing role of patients and their families/whanau in quality
Traditionally patients and their families were seen as
passive recipients of health services but in recent years the importance of more
meaningful consumer input into the review and design of services has gained
District Health Boards (DHBs) and their predecessor
organisations have historically endeavoured to listen to and incorporate
patients’ perspectives through mechanisms such as the complaints (and
compliments) process, surveys, feedback boxes, representation on reference
groups, health literacy groups, consultation meetings and hui and so on. Service
improvement and quality projects, too, have recognised the value of listening
to, and understanding, patient perspectives.
The way in which patients have input into service
improvement in healthcare in New Zealand is gradually evolving from what Bate
& Robert1,6 describe as a passive (or low
involvement) patient mode towards a partnership approach on the ‘continuum
of patient influence’ scale. This change has been influenced
proactive approach of various industries to improving customer experiences.
growth of service design.
more organised and active consumer voice.
prevalence of instant public feedback via the internet and social networking
In our New Zealand work, co-design projects incorporate six
main elements or phases.10 The first three
elements are primarily about capturing and understanding the patient experience.
While the latter three focus on improving the patient experience.
proactively establishing and maintaining meaningful relationships with
patients (and staff) to understand and improve health
working with patients and staff to come up with ideas about the goals of the
improvement work and how to go about doing it.
learning about and understanding patient and staff experiences of services, and
identifying things that can be improved.
turning the ideas into specific improvements.
choosing what improvements to make and how to make them.
turning improvement ideas into action.
described as a series of steps, in reality each element may overlap and the
order, and even the omission, of some elements is not necessarily important. The
common element is the active engagement of patients and their families in each
The core principles underpinning our co-design work are
equity, understanding experiences and improving
This paper discusses how Waitemata DHB, through its Patient
Co-design of Breast Service Project, has worked with patients and staff to
improve the breast journey and, on a small scale, trial a methodology not yet
widely acknowledged or used in New Zealand.
The Breast Service at Waitemata DHB provides services
at both North Shore and Waitakere Hospitals. At the time of the project, the
Service comprised two breast nurse specialists, four surgeons and four
oncologists. Weekly surgical and oncology clinics were held at North Shore
Hospital. Breast surgery was performed at both North Shore and Waitakere
Hospitals. The Breast Service averaged more than 2,500 referrals per year and
approximately 10% of these resulted in a diagnosis of breast cancer.
In 2007, the Patient Co-design of Breast Service
Project was set up to work alongside a sister project focussed on improving the
referral process and developing clinical guidelines for patients with breast
disease. Its aims were to use an innovative co-design approach to understand
patient experiences, make small, focussed changes with patients, make further
recommendations for changes in the service and develop a model for working with
patients that could be used in other services. Further, it strived to involve
patients in a deeper, more participatory way, than previously had been
In order to capture and understand patient experiences,
a number of tools were used. Each tool used produced results which then
influenced the type of tool which would be used next and the overall direction
of the project. The tools were: patient journey mapping, experience-based
surveys and co-design workshops.
Patient journey mapping—A
patient journey map is a summary of the service experiences patients have over
time. It includes patient journey phases, the people they have contact with, the
emotions they experience during their journey, touch points (significant points
of contact—tangible and intangible— that patients have with the
Service) and suggested improvement ideas.
Twenty-one people attended a journey mapping workshop
including patients and their supporters (14), staff (5) and workshop organisers
(2). Participants were guided through the development of patient journey maps in
groups. These were subsequently developed into a summary map (Appendix 1
). Participants discussed ideas for change and
improvements at the conclusion of the workshop and came up with a summary list
surveys—Experience-based surveys are one-page surveys to find out
how patients experience a specific part of the hospital journey. They allow
patients to come up with specific suggestions for improving their
To gain a deeper understanding of patients’
experiences, and to ascertain benchmark data for the Service, we developed an
experience-based survey (adapted from the NHS) (Figure 1).
Over a 6-week period, all patients who attended a
Breast Clinic appointment or a mammogram were given a survey. The survey asked
patients and their family/whanau to rate their experience of elements of their
journey. 182 surveys were completed (97 from those attending a breast clinic
appointment and 85 from mammography/ultrasound) representing approximately 31%
and 14% response rates respectively. It is important to note that the surveys
were not intended to be scientific and as such no demographic information was
collected. Further, responses were sought passively and were not followed up
which is likely to have affected the response rate.
workshops involve a wide variety of people who have an interest in the project
getting together in one place to discuss issues, learn together and make
decisions. These workshops may be based around starting up a project (start-up
or planning workshop), understanding patient or staff experiences or delving in
depth into an issue (journey mapping or ideas groups) or coming up with tangible
solutions (using tools such as prototyping).
The co-design workshop aimed to find out:
information given to patients was most useful?
other information would patients find useful to improve their experiences?
is the best time to get this information?
format would people like information provided
Twenty-nine people attended including
patients and their supporters (12), staff (11), community group representatives
(3) and workshop organisers (3). We asked participants to talk about their
response when they had the ‘right’ information and what difference
the ‘right information’ could make to them (Table 1).
Without right information
With right information
whole person, not just a number
In small groups, participants then identified what they
needed to know at each step in the journey, why they needed to know it, how they
could best find out about it and the best media or format for the
Patient journey mapping—Participants
identified a range of improvement ideas (see Table 2). There was an agreement
that many improvements were oriented towards the beginning of the journey
because they have the capacity to influence everything else that follows.
What patients wanted
Tools and actions suggested
Encourage women to go to their GP earlier for
Develop diagnosis and referral guide for GPs.
A supporter with them when they had their results
appointment (and for any other such meetings where they might be told bad
Staff to recommend and emphasise the benefits of this
when the appointment is made.
Kind and empathetic staff.
Have patients give talks about their experiences and
problems to staff and patients on training courses.
A ‘host’ for women on their entry to the
Service to act as their ‘navigator’ through their journey.
Provide one constant point of contact throughout the
The option of a longer stay in hospital after surgery to
prepare psychologically and practically for the return home.
Help people prepare for recovery at home, building their
confidence and skills (method to be decided).
Minimal delays in waiting for surgery and other
Stop treating cancer patients as ‘elective’
Earlier/ quicker appointments with oncology after
Provide more staff and communicate about delays and help
people deal with the stresses of waiting.
respondents had a very positive experience while attending the hospital and
greatly appreciated the efforts of staff to make their experience as positive as
possible (Figure 2). Comments such as “excellent service” and
“staff were great” were common. However, about one in 10 patients
had a ‘bad’ or ‘very bad’ experience, and these made a
big difference to the average rating of the service.
Most negative experiences arose through:
anxiety while waiting at any time, especially if staff were
uninformative (the bigger problem) or impolite.
and pain during mammography, biopsy and clinic appointments, especially if staff
were uninformative, rough or impolite, or if patient expectations of pain were
not actively managed.
Further suggestions made as
to ways of improving the service included:
information about what the appointments are for and what patients can expect
when they attend.
facilities ranging from layout the waiting rooms through to design of
communication about likely pain levels and how to minimise them.
clear explanation at the end of appointments about what will happen next and
Co-design workshops—At the start of
their journey, patients wanted answers to ‘big picture’ questions to
orient themselves to the news of their cancer and to gain a picture of how the
Breast Service would be helping them. They wanted reliable, relevant facts about
cancer and the Breast Service. Many were too shocked to take in detailed
information and needed time to adjust to the news of cancer. At the start of
treatment patients typically wanted information to help them understand what
their possible future outcomes and their best treatment options were.
Recommendations focussed on ways of developing processes to
improve communication, and included:
a staff communication guide for use by all clinical staff who have contact with
a patient held record
information given out within the DHB
a sectionalised/care diary.
Further workshops were
held to develop these ideas.
will I know the radiology results? Who will tell me?
sort of breast cancer do I have?
is my prognosis?
bad is my cancer and what are the treatment options?
I have to have treatment?
is my best treatment option? Why?
do I know that the treatment will be successful?
I get sick with my cancer treatment?
will my appointment be?
there a chance of the cancer coming back? How will I know? What can I do to
lessen the chance?
long do I have to live? What should my priorities be?
Emerging themes for the Breast
Service—Each of the three tools yielded different information
that was then analysed to identify key themes. Specific improvements were
prioritised during a co-design workshop. There were four emerging themes.
provision of timely, accessible information was a key issue. Equally important
was a way of managing the vast array of information that breast patients
received. Patients were keen that the information they received was streamlined
and that tools, e.g., folders and hand held records, were developed to help them
manage the information.
role of compassionate communication. It was important for patients that staff
were able to communicate clearly and with compassion. Simple things such as
smiling, introducing oneself and one’s role, explaining concepts
accurately and being clear about what would happen next were vital for patients.
The ability of staff to understand the patient experience was seen as
need for navigation and co-ordination. Patients wanted a person who could meet
and greet them on arrival and help them navigate their way through the journey,
both literally and metaphorically. There were various opinions as to who would
be best suited to provide this role – patient buddies or a dedicated staff
member – and the scope, i.e., whether it would extend to being a service
desire for a pleasant, easily navigable physical environment. This encompassed a
wide range of issues ranging from getting a car park and finding the clinic
through to the layout of the clinic and the design of the mammography
Changes made—As stated
earlier, amongst other things the project aimed to implement small, focussed
changes. The improvements we made are listed in Table 4.
A map of the patient journey
A strategic tool for staff allowing them to see the
experiences over time. Provides a framework for evolving current and future
Patient information folder
A folder of information to help patients navigate their
way through the Service.
A suite of seven new patient information leaflets.
Enabled local information to be included and a constancy of supply of
Patient held record
A double-sided card for patients to track their
appointments. (Useful for staff too.)
Patient journey guide
A high level visual map of the journey. Staff can use
this with patients to explain their journey and where they are in the process.
A poster in cartoon format with tips for patients and
staff on how to communicate better.
A gown, specifically designed to address usability
problems for patients and staff was developed.
Development of a co-design toolkit and website for
healthcare services. The toolkit has 18 tools matching six key project
Implementing co-design in healthcare can be a challenging
endeavour, especially when clinical workloads are high and the organisational
environment is fiscally constrained. However, the benefits of co-design, both in
terms of increased staff understanding of patients’ experiences and
improved experiences for patients, are potentially enormous.
Key learnings about the process:
of co-design does not mean the abandonment of more standard, well-recognised
quality improvement methodologies. Co-design can potentially work well alongside
Lean and Six Sigma methods (which focus on more measurable areas of service
improvement such as prioritisation, queuing and adherence to guidelines) as long
as one method does not subsume the other.
with patients early. Engagement is absolutely critical to true and successful
co-design. Having patents involved early means that their experiences and
requirements can be taken into account at the start of the process
rather than people presuming to know what is
required.2,3 In our project patients were
invited to a workshop before decisions were made about its final scope
and structure. Relationships with patients were developed and continued
throughout the project to varying degrees. An important consideration was the
acknowledgement that many patients were still receiving treatment during the
project so energy levels and availability varied accordingly.
hard to ensure a representative spread of patients. It is acknowledged that
self-selecting patients may not be representative of the patient population more
generally. Specific methods should be considered to target involvement across
the patient spectrum.
buy-in is fundamental. Clinical, management and administrative staff are busy
people, yet their involvement in co-design work is vital. Staff attendance at
workshops with patients gives them a unique opportunity to understand
patients’ experiences in a different way. In a supportive, workshop
environment where staff and patients are equal, patients will often open up and
share their perspectives in a way they would never do in the clinic room. The
success of co-design work then, is greatly enhanced through communication with
staff and their active participation.
prepared to try things outside your comfort zone. Many elements of co-design
involved trying new things and that required faith in the process. Early on a
workshop was held with a wide variety of stakeholders including medical staff,
patients, people interested in innovation and improvement specialists from
external industries. Having extensive input early on in the project provided a
richness of ideas from which to build a strong foundation. Use of service design
tools, such as emotional journey mapping, involved learning new ways of thinking
and challenging existing ways in which things have been
Spreading the word—As
a result of the success of the project, co-design has been used within Melanoma
Services at Waitemata DHB and more recently looking at advance care planning at
While co-design work has not yet become widespread in New
Zealand, there is certainly a real interest in the method. The Ministry of
Health funded the development of a health co-design
and website www.healthcodesign.org.nz
sessions organised at Waitemata DHB proved popular, with a willingness and
desire amongst staff to learn about and use co-design. In 2011, the Central
Cancer Network facilitated a series of health service co-design workshops within
their region, primarily aimed at a cancer control audience. The need for using a
co-design approach to develop supportive care strategies for adults with cancer
in New Zealand has also been
With ongoing funding and support, co-design could spread to
other DHBs and health services throughout New Zealand. The use of co-design
could initially be targeted to high need areas. For example, it could have
particular benefit for services where there has been a lot of staff
dissatisfaction or patient complaints, where there are high DNA (Did Not Attend)
rates or where a new service or facility is being developed.
limitation of this work that planned evaluation was not able to be undertaken on
the effectiveness of the improvements, i.e., what (measurable) positive
difference did the improvement have on patients’ experience of the
service? We recommend that co-design projects factor in time and resources to
allow an evaluation to take place after the improvements have been made and
bedded down. Note that a co-design project identifies process and outcome
criteria as part of designing improvements. These can then be used in evaluation
organisations simply implement improvement initiatives without consideration of
ongoing sustainability of their work. Organisations that are successful are the
ones that can both implement and sustain improvement over time leading to
increased quality and patient experience at lower cost. Co-design's emphasis on
working with all stakeholders on an ongoing basis, and service users in
particular, suggests it is implicitly more sustainable than conventional
approaches. Further research in this area is recommended.
Patient Co-design of Breast Service Project not only made tangible improvements
but it has demonstrated the potential value of engaging patients and focusing on
their experiences. Although not formally evaluated, a limitation noted above,
our work supports the findings of people who have adopted the method overseas:
using co-design within the healthcare context is valuable and worthwhile. We
recommend that DHBs and other health services in New Zealand recognise the value
and benefits of co-design and consider adopting it as a key approach to service
interests: None declared.
Author information: Hilary Boyd,
Performance Improvement Specialist, Auckland District Health Board, Auckland,
New Zealand; Stephen McKernon, Design Researcher, Supplejack, Auckland, New
Zealand; Bernie Mullin, Public Health Physician and Consultant, Health
Roundtable, Sydney, Australia; Andrew Old, Public Health Physician and Clinical
Lead, Concord Performance Improvement Programme, Auckland District Health Board,
Auckland, New Zealand
(Note: Hilary Boyd, Bernie Mullin and
Andrew Old all worked in the Healthcare Improvement Team at Waitemata District
Health Board at the time this piece of work was undertaken.)
Acknowledgements: We thank all those
involved in the Patient Co-design of Breast Service Project, in particular, all
the patients who took part. Special thanks also go to Richard Harman, Surgeon
and Clinical Leader for this project.
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