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Journey mapping as a novel approach to healthcare: a qualitative mixed methods study in palliative care

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Background Journey mapping involves the creation of visual narrative timelines depicting the multidimensional relationship between a consumer and a service. The use of journey maps in medical research is a novel and innovative approach to understanding patient healthcare encounters. Objectives To determine possible applications of journey mapping in medical research and the clinical setting. Specialist palliative care services were selected as the model to evaluate this paradigm, as there are numerous evidence gaps and inconsistencies in the delivery of care that may be addressed using this tool. Methods A purposive convenience sample of specialist palliative care providers from the Supportive and Palliative Care unit of a major Australian tertiary health service were invited to evaluate journey maps illustrating the final year of life of inpatient palliative care patients. Sixteen maps were purposively selected from a sample of 104 consecutive patients. This study utilised a qualitative mixed-methods approach, incorporating a modified Delphi technique and thematic analysis in an online questionnaire. Results Our thematic and Delphi analyses were congruent, with consensus findings consistent with emerging themes. Journey maps provided a holistic patient-centred perspective of care that characterised healthcare interactions within a longitudinal trajectory. Through these journey maps, participants were able to identify barriers to effective palliative care and opportunities to improve care delivery by observing patterns of patient function and healthcare encounters over multiple settings. Conclusions This unique qualitative study noted many promising applications of the journey mapping suitable for extrapolation outside of the palliative care setting as a review and audit tool, or a mechanism for providing proactive patient-centred care. This is particularly significant as machine learning and big data is increasingly applied to healthcare.
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R E S E A R C H Open Access
Journey mapping as a novel approach to
healthcare: a qualitative mixed methods
study in palliative care
Stephanie Ly
1
, Fiona Runacres
1,2,3
and Peter Poon
1,2*
Abstract
Background: Journey mapping involves the creation of visual narrative timelines depicting the multidimensional
relationship between a consumer and a service. The use of journey maps in medical research is a novel and
innovative approach to understanding patient healthcare encounters.
Objectives: To determine possible applications of journey mapping in medical research and the clinical setting.
Specialist palliative care services were selected as the model to evaluate this paradigm, as there are numerous
evidence gaps and inconsistencies in the delivery of care that may be addressed using this tool.
Methods: A purposive convenience sample of specialist palliative care providers from the Supportive and Palliative
Care unit of a major Australian tertiary health service were invited to evaluate journey maps illustrating the final
year of life of inpatient palliative care patients. Sixteen maps were purposively selected from a sample of 104
consecutive patients. This study utilised a qualitative mixed-methods approach, incorporating a modified Delphi
technique and thematic analysis in an online questionnaire.
Results: Our thematic and Delphi analyses were congruent, with consensus findings consistent with emerging
themes. Journey maps provided a holistic patient-centred perspective of care that characterised healthcare
interactions within a longitudinal trajectory. Through these journey maps, participants were able to identify barriers
to effective palliative care and opportunities to improve care delivery by observing patterns of patient function and
healthcare encounters over multiple settings.
Conclusions: This unique qualitative study noted many promising applications of the journey mapping suitable for
extrapolation outside of the palliative care setting as a review and audit tool, or a mechanism for providing
proactive patient-centred care. This is particularly significant as machine learning and big data is increasingly
applied to healthcare.
Keywords: Patient journey mapping, Health services research, Palliative care, Illness trajectory, Proactive healthcare,
Medical informatics, Patient-centred care
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data made available in this article, unless otherwise stated in a credit line to the data.
* Correspondence: peter.poon@monash.edu
1
Faculty of Medicine Nursing and Health Sciences, Monash University,
Clayton, VIC, Australia
2
Supportive & Palliative Care Department, McCulloch House, Monash Medical
Centre, 246 Clayton Road, VIC 3168 Clayton, Australia
Full list of author information is available at the end of the article
Ly et al. BMC Health Services Research (2021) 21:915
https://doi.org/10.1186/s12913-021-06934-y
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Introduction
Patterns of healthcare utilisation are evolving in re-
sponse to the ageing population and increasing burden
of chronic disease. There is an urgent need to ensure
timely proactive medical care, effective and efficient re-
source deployment, while averting unnecessary, often
distressing, emergency department (ED) presentations,
admissions and conveyor belt medicine. A key area of
medicine able to address these issues is palliative care.
Central to optimal delivery of palliative care is timely
initiation [13]. However, differing patient, illness trajec-
tory and clinical factors have resulted in inconsistencies
in the degree of care provided [4,5]. This has subse-
quently translated into significant variability in palliative
care research and limitations in applying international
evidence to clinical practice [6]. The utilisation of jour-
ney mapping has the potential to address these incon-
sistencies and to our knowledge, this research is the first
of its kind.
Journey mapping is a relatively new approach in medical
research that has been adapted from customer service and
marketing research [7]. It is gaining increasing recognition
for its ability to organise complex multifaceted data from
numerous sources and explore interactions across care
settings and over time. Medical journey mapping involves
creating narrative timelines, by incorporating markers of
the patient experience with healthcare service encounters.
Integrating diverse components of the patient healthcare
journey provides a holistic perspective of the relationships
between the different elements that may guide directions
for change and service improvement. As medical journey
mapping is still in its infancy, there is an absence of litera-
ture exploring implementation. Of the existing literature,
journey mapping techniques are described mainly in
process papers, outlining their potential utility in observ-
ing healthcare delivery and patient outcomes [812].
However journey mapping paradigms have broader sig-
nificance across healthcare, especially in an environment
for which machine learning, big data and artificial
intelligence is maturing.
We aimed to determine whether journey mapping
could contribute to the improvement of patient-centred
medical research in a palliative care setting and provide
new insight into possible pivot-pointsor moments of
care that could be altered to improve care delivery. Spe-
cifically, we sought to determine whether journey maps
were able to assist in capturing a holistic, longitudinal
and more integrative patient history whilst outlining
healthcare provision and identifying gaps in care.
Methods
Study design
We performed a qualitative mixed-methods analysis of a
journey mapping tool. The tool was purpose-developed
and sample journey maps were derived from the scanned
medical records of palliative care patients. A panel of
specialist palliative care providers were then involved in
an online questionnaire combining a modified Delphi
approach with inductive thematic analysis. Figure 1de-
picts a flow diagram of the methodology.
All methods were carried out and reported in accord-
ance with Standards for Reporting Qualitative Research
(SRQR) guidelines and Consolidated criteria for Report-
ing Qualitative research (COREQ) criteria for reporting
qualitative studies.
Ethics
Ethics approval for this study was obtained from Mon-
ash Health Human Research Ethics Committee Monash
Health Ref: RES-29-0000-071Q) and Monash University
Human Research Ethics Committee (Project ID: 18,853).
Data
Data was collected from a retrospective cohort of 104
consecutive palliative care patients from a major tertiary
hospital network in Melbourne, Australia. Inclusion cri-
teria were patients greater than 18 years of age who had
died in hospital between the 1st of August 2018 and
31st of October 2018, had at least one inpatient pallia-
tive care admission in their last year of life and scanned
medical records data spanning at least three months
duration. This sample size was considered sufficient to
incorporate a varied and representative sample of pallia-
tive care patients encountered in the tertiary hospital.
Following data collection, a Python Software-based
code was designed to extract de-identified data and cre-
ate journey map visuals. All 104 journey maps were in-
dependently screened by two investigators (PP and FR)
and a purposive sample of 16 maps was selected for ana-
lysis based on seven criteria for informative value. The
criteria that the 104 maps were assessed on included
their ability to provide insight into the initiation, trig-
gers, delivery and barriers of palliative care, SPICT
scores, pivot points and disease trajectories.
Modified Delphi approach and thematic analysis
A qualitative mixed-methods approach involving the-
matic analysis and a modified Delphi technique was uti-
lised as an explorative analysis of expert opinion. The
consensus agreement was used to reinforce and confirm
the patterns of significance identified through thematic
analysis. In combining these two approaches, there was
greater flexibility in responses and additional structure
to support analysis.
The modified Delphi approach used in this study was
adapted from the enhanced Delphi method described by
Yang et al. [13] and consisted of a questionnaire pre-test
and two rounds of questionnaire distribution. A total of
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14 email invitations were sent to a purposive sample of
seven senior palliative care physicians and seven pallia-
tive care nurse consultants across two palliative care in-
patient units within a major tertiary hospital network in
Melbourne, Australia. The emails contained an explana-
tory statement, a questionnaire link and the file contain-
ing the 16 de-identified journey maps.
The questionnaires consisted of 16 statements per
journey map, covering eight palliative care domains: pal-
liative care triggers, initiation, delivery, outcomes, bar-
riers, pivot-points, needs assessment (using the
Supportive and Palliative Care Indicators Tool, SPICT)
and the utility of advanced care plans. An additional
nine statements assessed the utility of the journey map
Fig. 1 Flow chart detailing data collection, journey map development and analysis. This figure illustrates the phases and processes of this study.
Data was collected from a retrospective cohort of 104 palliative care patients and journey maps were subsequently developed. Preliminary
screening of the journey maps was performed to obtain a purposive sample that best highlighted the breadth of information and healthcare
encounters captured within the journey maps. A total of 16 maps were selected for further analysis. Following questionnaire development and
pre-test, questionnaires were distributed, and responses collected and analysed over two rounds to obtain consensus. Free-text comments from
both rounds were collected for thematic analysis
Ly et al. BMC Health Services Research (2021) 21:915 Page 3 of 9
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approach (see Table 2). All statements were ranked
using Likert scales. A four-point Likert scale including
the options: insufficient information, disagree, neither
agree nor disagree and agree was used to assess individ-
ual journey maps. A five-point Likert scale including op-
tions: strongly disagree, somewhat disagree, neither agree
nor disagree, somewhat agree and strongly agree was
used to assess the journey mapping approach. For ana-
lysis of consensus, the results were categorised to reflect
overall agreement by using a three-point scale consisting
of disagree, neutral and agree. Consensus was defined as
agreement of greater than 70 % of respondents in any
one of these three categories. Following the first round,
all consensus statements were determined and partici-
pants were sent a second questionnaire containing an-
onymous feedback from the first round and statements
which did not reach consensus for re-evaluation using
the condensed three-point Likert scale.
Following each palliative care domain, free-text fields
were included to collect comments and provide data for
inductive thematic analysis. Analysis of the free-text
comments from both rounds was guided by Braun and
Clarkes phases of thematic analysis [14]. The codes and
themes were derived from the data using NVivo 12 Plus
software to generate nodes, initial codes and preliminary
subthemes. Candidate themes were reviewed by two
additional investigators (PP and FR) to ensure
consistency and the final themes were defined. Providing
participants with the opportunity to review de-identified
feedback through the Delphi questionnaire enabled dis-
cussion, reflection and clarification of comments, thus
achieving thematic saturation with a smaller group of
participants.
Additional steps were taken to increase trustworthiness
of the qualitative data per Lincoln and Gubas criteria for
credibility, transferability, dependability and confirmability
across all phases of analysis [1517]. Triangulation of the
methods, researchers and analysts aimed to increase
consistency and accuracy, whilst reducing interpretation
errors and the effects of bias. Thorough audit trails and
Fig. 2 Screen capture of Journey Map 6. A screen capture of one of the 16 interactive journey maps that was analysed by the Delphi panel. The
lower segment of the map depicts healthcare interactions that occurred in hospital and in the community. Delphi participants are able to hover
over specific health service touch points to obtain more information about the specific interaction that occurred. The upper segment represents
functional performance scores using two different tools- the Australian Karnofsky Performance Scale (AKPS) and the Resource Utilisation Groups-
Activities of Daily Living (RUG-ADL). The orange vertical line indicates when palliative care needs first presented using the SPICT screening tool.
The vertical purple line indicates when specialist palliative care was initiated. Delphi participants were able to analyse the maps and respond to
statements on the palliative care provided
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reflexive journaling were maintained. The use of the on-
line questionnaire with free-text fields for thematic data
collection limited the role of the researcher and the poten-
tial for associated bias.
Results
While this study also produced findings relevant to
current issues of palliative care delivery, we will for the
purpose of this paper, present results specific to the clin-
ical utility of journey maps.
The journey maps
Figure 2depicts one of the 16-sample journey maps ana-
lysed by participants and illustrates the key elements of
a map. While journey maps are interactive visualisations
with options for providing additional information sum-
marising patient healthcare encounters, we are unable to
fully convey the dynamic functions of the mapping tool
in this paper. The journey map in Fig. 2illustrates the
final year of life of a 73 year old male patient with diffuse
large B-cell lymphoma.
The map reveals that at day 112 prior to death, pallia-
tive care needs were noted using the SPICT screening
tool. It is also at this point that the patients functional
performance scores began to decline, with patient notes
from day admissions and clinic visits also documenting
poor tolerance of chemotherapy side effects, fatigue, an-
orexia and weight loss. In response to this pattern of de-
cline, participants noted that there was an opportunistic
role for community palliative care support that was
missed and could have potentially negated the need for
the final ED admission.
Onc (sic)(oncology) outpatient notes describing
symptoms, deterioration, carer distressCommunity
pall care (sic)(palliative care) could have been help-
fulParticipant 2, Journey Map (JM) 6.
Another major pivot-point occurred during the pa-
tients admission to ED on day 50 when notes indicated
that the patients wife was struggling to cope with care
at home. Given the nature of the prolonged admission
with multiple complications that followed, Delphi partic-
ipants questioned the suitability of the transfer to the re-
habilitation ward.
Symptoms and functional decline appear to be re-
lated to lymphoma and not an acute illness. More
appropriate for pall care (sic) than rehab (sic)(reh-
abilitation).Participant 6, JM6.
Additionally, the decision to initiate palliative care only
four days prior to death was delayed and there was a role
for earlier palliative care involvement.
Clearly PC (sic)(palliative care) involvement inad-
equate and was a later referral for terminal care
onlyParticipant 1, JM6.
Pt (sic)(patient) would have benefitted from earlier
palliative care referralParticipant 7, JM6.
Through the maps, participants were able to observe
patterns of deterioration with a broader view of continu-
ity of care and determine pivot-points, where the in-
volvement of specialist palliative care had the potential
to improve the patient experience.
Modified Delphi
The two Delphi rounds were conducted over 31 days
with the first round taking 13 days and the second round
spanning 18 days. A total of seven responses were col-
lected from the first round of the online Delphi ques-
tionnaire. Six members of the medical staff and one
member of the nursing team responded, representing a
50 % response rate. All seven participants completed the
questionnaire in full. For the second round, all first
round participants were re-contacted and invited to par-
ticipate. All seven participants from the first round
agreed to participate, attributing to a 100 % second
round response rate and 100 % questionnaire completion
rate. Participant characteristics have been described in
Table 1. All participants are senior palliative care team
members.
The statements assessing journey map utility are
shown in Table 2. As there was a strong overall consen-
sus following the first round of the Delphi questionnaire,
these statements were not rechallenged in a second
round. However free-text fields were included to allow
participants to provide any further comments.
Thematic analysis
Following analysis of all free-text comments, the follow-
ing themes were derived regarding the applications of
the journey mapping tool: (1) design and information,
(2) longitudinal care and the patient trajectory and (3)
opportunities for care improvement. These are discussed
with supporting quotations listed in Table 3.
Theme 1: tool design and information
A large determinant of the practicality of the tool relates
to its design. Participants provided feedback regarding
the design and informational elements of the journey
mapping tool used in this study.
Aspects of the interface Participants found that there
were certain elements of the journey maps that limited
functionality of the tool, however these were associated
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with the specific design of the tool interface, rather than
the actual components underlying the journey mapping
approach. Participants responded well to the concept of
a visual representation of patient information and the
timeline view of care that was constructed.
Catering information needs Given the palliative care
specific focus on patient care presented in these maps,
participants found that at times there was an excess of
unnecessary information and insufficient palliative care
appropriate information. The absence of objective mea-
sures of quality of life also restricted the ability of partic-
ipants to determine whether outcomes were improved as
a result of interventions.
Theme 2: Longitudinal care and the patient trajectory
The benefits of conveying patient information and
healthcare encounters in the form of journey maps were
also recognised. Journey maps provided a patient-
centred focus of care that characterises patient health-
care interactions within a longitudinal trajectory rather
than individual care episodes as is standard in conven-
tional medical records. In doing so, patterns of the dis-
ease trajectory and also patient decline can be mapped
to provide more proactive patient care.
Theme 3: Opportunities for care improvement
The benefits of having the journey mapping tool and its
utility if incorporated into patient care were also
Table 1 Characteristics of Delphi and thematic analysis participants
Gender Team role Years fully qualified experience
a
Dual specialist training
b
Participant 1 Male Medical >15 -
Participant 2 Female Medical >5 -
Participant 3 Female Medical >5 Palliative medicine/ oncology
Participant 4 Male Medical <5 Palliative medicine/ general medicine
Participant 5 Female Medical >5 Palliative medicine/ oncology
Participant 6 Male Medical >15 -
Participant 7 Female Nursing >15 -
a
Number of years since completing Advanced training and Chapter of Palliative Medicine (medical participants) or the number of years since completing
certifications in palliative care nursing
b
All participants are involved in hospice, acute palliative care inpatient, consult and community care
Table 2 Journey map assessment: consensus by statement
Statement Round Consensus Percentage (%)
The journey maps were clear and easy to understand 1Agree 100
2--
The journey maps were user-friendly 1Agree 100
2--
There is a benefit to conveying patient information in journey maps 1Agree 100
2--
Presenting information in the form of journey maps synthesises a
greater holistic understanding in comparison to conventional methods
1Agree 100
2--
The journey maps assisted in gauging the benefits and outcomes of
palliative care intervention
a
1No consensus
2--
It is possible to identify potential pivot-points of care using journey
maps and the information given
1Agree 100
2--
Patterns in the disease trajectories could be identified 1Agree 100
2--
Journey maps would be useful in clinical practice 1Agree 100
2--
Journey maps would be a useful way to communicate patient
information with other healthcare professionals
1Agree 100
2--
a
Statement not considered for round 2 as feedback from first round clearly suggestive of insufficient information to determine outcomes and benefits
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explored, with participants noting numerous possible ap-
plications and opportunities to improve patient care.
Identifying barriers and missed opportunities for
care By framing the patient healthcare experience as a
longitudinal and continuous journey, participants were
able to recognise missed opportunities to address bar-
riers and initiate more timely palliative care.
Clinical applications Participants also noted that jour-
ney maps were a useful tool for identifying gaps in care
provision and underlying barriers to initiation and deliv-
ery. This could assist clinicians with recognition of
pivot-points and opportunities to enhance care by pre-
emptively managing issues. Additionally, journey maps
presented possible applications as a review or screening
tool to evaluate patient care needs and enable better
patient-centred care practices both in the clinical and re-
search setting.
Findings from both the modified Delphi and thematic
analysis appeared congruent, with the consensus consist-
ent with emerging themes.
Discussion
Journey mapping is a novel approach to reviewing pa-
tient healthcare interactions over time and across care
settings to identify potential pivot points, which in turn
can facilitate timely healthcare and promote proactive
delivery of patient-centred care. Our research has fo-
cused on palliative care as the model to explore this ap-
proach, especially given its importance in an ageing
population and considering many aspects of care are
ubiquitous to this cohort.
Variation and inconsistencies in palliative care initi-
ation and delivery have limited the applicability and role
of research in informing evidence-based practice [6]. A
journey map approach may provide one solution to ad-
dress these challenges. The journey mapping tool used
in this study was found to enable a patient-centred focus
to the clinicians perspective, increasing opportunities to
pro-actively identify pivot-points and deliver more ef-
fective patient care.
In comparison to conventional medical records, jour-
ney maps link patient healthcare encounters longitudin-
ally, promoting continuity and a holistic understanding
of care across settings and over time. As described in
conceptual studies, journey maps offer a perspective that
takes into account the more dynamic and multidimen-
sional aspects of healthcare interactions to facilitate en-
hanced insight into the patient experience within
medical research [10,18]. This enables a more inte-
grated interpretation and awareness of individual epi-
sodes of care and how these contribute to a patients
overall health and their interaction with health services.
Our participants also noted that journey mapping en-
abled greater emphasis on particular patient outcomes
Table 3 Quotations supporting thematic analysis
Component Quotations
Theme 1: Design and information
Aspects of the interface It provided a good pictorial representation, once I developed more experience and understanding of the map. It
was relatively easy to understandParticipant 6, Journey Map Assessment
the interface was clunky Hovering over a button did not necessarily yield information for that button
Participant 5, Journey Map Assessment
Catering information needs While this is a good idea, the amount of information in the map needs to be refined to be user friendly and
practical.Participant 5, Journey Map Assessment
All the data was useful although inclusion of symptom management outcomes would help gauge the
effectiveness of pall care input.Participant 6, Journey Map Assessment
Theme 2: Longitudinal care and the patient trajectory
Longitudinal care and the patient
trajectory
The map was useful to gain insight to the longitudinal needs and barriers for which the patient experience
might have been improvedParticipant 1, Journey Map 1
It provided a good overview of the trajectory focus rather than being event focused as I would be in a
traditional history. It provided me with a sense of the pattern of illness and insight into key points and the
commentary key issues at that point.Participant 1, Journey Map Assessment
Theme 3: Opportunities for care improvement
Identifying barriers and missed
opportunities for care
There were several missed triggers (e.g. disease progression into incurable stage with physical symptomatology,
emotional distress) prior to eventual trigger for referral.Participant 4, Journey Map 3
Times pain and deterioration noted in multiple onc[ology] clinic notes, and also the potential benefits/roles for
early referral to PC, however not initiated at these times.Participant 2, Journey Map 4
Clinical applications Overall has great potential to be used in clinical care of patients and their families and give health providers an
overview of the patient which is not possible in conventional medical historiesI can see that pivot points are
evident that are pro-active and would impact clinical outcomes.Participant 1, Journey Map Assessment
It provides a good overview of service delivery and would therefore be useful for health economics/service
planningParticipant 4, Journey Map Assessment
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that may be difficult to observe or measure using con-
ventional research methods. The journey mapping tool
was also able to highlight gaps in care and facilitate rec-
ognition of patterns of disease progression and deterior-
ation with a greater emphasis on patient needs and
experiences.
The use of the journey mapping approach has further
enabled identification of barriers and potential biases to
providing effective care. This study confirms that jour-
ney mapping as a tool is effective at identifying specific
barriers and trends in care provision and increase oppor-
tunities for care providers to pro-actively and appropri-
ately address these.
Journey maps have traditionally been used in research
to review and analyse the consumer experience and pro-
vide feedback on avenues for development [7]. Our
panel consensus affirmed that journey mapping had ap-
plications as a clinical audit tool to identify gaps in care
and opportunities for improvement when used to assess
retrospective patient experiences. This is consistent with
known utilities of previous journey mapping tools. Other
identified benefits included potential to achieve better
collaboration between healthcare providers, enabling
smoother transitions of care and improving communica-
tion between healthcare providers and patients.
Limitations of this study include the design and inter-
face of the journey mapping tool. Following a thorough
search, pre-existing journey mapping software and tools
were considered inappropriate for this study as they
were oversimplified, unable to convey complex informa-
tion appropriately and not designed for use in a medical
setting. Consequently, self-designing a tool was consid-
ered the most suitable approach. The technical limita-
tions identified did not reflect the utility of the journey
mapping paradigm.
The retrospective nature of this study prohibits direct
patient feedback. Consequently, the patient and care-
giver perspective, including quality of life and symptom
burden experienced were not well represented. Future
research utilising a prospective approach with patient
and caregiver involvement is needed to address these re-
search gaps.
The response rate to the initial Delphi questionnaire
was only 50 % due to time constraints and limited ability
to accommodate delayed responses, however the re-
sponse rate to the second Delphi questionnaire was
100 %. While this does limit the diversity of responses, it
suggests good retention and engagement of involved
participants with meaningful contributions.
The size of the Delphi panel in this study was seven.
Studies have noted that smaller panels are still able to
provide effective and reliable results and a minimum
panel size of seven is considered suitable in most cases
[19,20]. Our modified approach complied with this.
Despite being a single institution study, the participants
come from a diverse clinical background covering mul-
tiple domains of specialty palliative care, henceforth re-
ducing potential bias. This study demonstrates that
there is a role for journey mapping in clinical practice,
however, considerations must be made for future design.
Given the volume of patient data available, the amount
of information presented needs to be appropriately mod-
erated to provide clarity and best utilisation of the re-
sources available. With the gradual transition of most
health services from paper medical records to electronic
medical records, the inclusion of a journey mapping tool
into clinical practice is becoming more feasible. As med-
ical technology continues to grow, the potential for in-
corporation of artificial intelligence, machine learning
and big data into journey maps could be the key to pro-
viding pro-active, holistic patient-centred care that pre-
emptively anticipates patient needs.
This study is one of the first to use a journey mapping
tool in clinical practice to explore the healthcare journey
and patient experience on a larger scale. The maps were
used to depict a more fluid and continuous interpret-
ation of the patient healthcare experience which enabled
a more holistic and patient-centred analysis of palliative
care provision. Furthermore, this is one of the first med-
ical journey mapping studies to consider and propose
potential pivot-points and opportunities for changes in
the delivery of care. The use of journey maps can en-
hance the holistic patient healthcare experience and en-
able better patient-centred care not only in the palliative
care setting, but also more broadly across healthcare
from both a research and clinical practice perspective.
Further application studies in other contexts are
required.
Acknowledgements
We would like to acknowledge and extend our thanks to Kevin Shi who
contributed to the Python code used for the journey map visuals.
Authors' contributions
Conceptualisation PP. Methodology: PP, FR, SL. Formal analysis PP, FR, SL.
Investigation: PP, FR, SL. Writing original draft: SL. Writing- Review and Editing:
PP, FR. Supervision: PP, FR. The author(s) read and approved the final
manuscript.
Funding
This research did not receive any specific grant from funding agencies in the
public, commercial, or not-for-profit sectors.
Availability of data and materials
The datasets generated and/or analysed during the current study are not
publicly available due to the confidential nature of the patient data, but are
available from the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
Ethics approval for this study was obtained from Monash Health Human
Research Ethics Committee Monash Health Ref: RES-29-0000-071Q) and Mon-
ash University Human Research Ethics Committee (Project ID: 18853).
Ly et al. BMC Health Services Research (2021) 21:915 Page 8 of 9
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Informed consent from patients was not required as this was a retrospective
audit of pre-existing available data which was de-identified prior to analysis.
All participants of the Delphi questionnaire were provided with an explana-
tory statement and by completing and returning the questionnaires, consent
was implied.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Author details
1
Faculty of Medicine Nursing and Health Sciences, Monash University,
Clayton, VIC, Australia.
2
Supportive & Palliative Care Department, McCulloch
House, Monash Medical Centre, 246 Clayton Road, VIC 3168 Clayton,
Australia.
3
Calvary Health Care Bethlehem, Parkdale, VIC, Australia.
Received: 10 April 2021 Accepted: 24 August 2021
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... Another strength of this PJM methodology is that it intentionally includes demand (users)-and supply (healthcare provider)-side insights from within the same health system catchment area. This helps to systematically identify service delivery gaps and contextually specific improvements to health services [46][47][48]. For example, HCP insights about the impacts of COVID-19 redirecting health systems resources were helpful to contextualize patient's observations about sudden stockouts in medications and testing kits in this PJM study. ...
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Purpose The purpose of this paper is to describe a study which aims to provide an alternative approach to clinical governance. This involves patients in redesigning services based on their actual experiences of health services. This will be of interest to front line health care staff and public and patient involvement leads. Design/methodology/approach The paper illustrates Experience Based Design (EBD) as a structured, formal methodology with clearly defined roles, actions and timescales. A case study approach is used to describe the implementation of this model in a District General Hospital. Findings This study demonstrates how three theoretical components of good design: functionality, engineering and aesthetics can be used as a framework to improve performance, safety and governance and in addition, actual experience of the service for patients and staff. Research limitations/implications The case study approach used has provided a good range of learning and transferable information; however, the results are currently based on a single site. Practical implications The use of the EBD approach will ensure that healthcare services truly reflect the needs of patients and carers based on their specific experience. It provides a mechanism whereby patients' views contribute fully to the change process leading to safer, more effective and reliable care. This approach will require the application of the non‐clinical competencies included in the Medical Leadership Competency Framework and specific health and wellbeing dimensions in the Knowledge and Skills Framework. Originality/value This paper offers a new model that can be incorporated into service redesign. The model enables greater understanding of clinical governance as described by patients through narrative of their actual experiences.