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 75

Chapter 6
Patient Journey Record
Systems (PaJR):
The Development of a Conceptual
Framework for a Patient Journey System
Carmel M. Martin
Trinity College Dublin, Ireland

Rakesh Biswas
Peoples College of Medical Sciences, India

AnkurJoshi
People:~ College of Medical Sciences, India

Joachim Sturmberg
Monash University and The University ofNewcastle, Australia

ABSTRACT

This chapter argues the needfor a paradigm shift to focus health care from a top down fragmented pro-
cess driven activity to a user-driven journey of the individual whose health is at stake. Currently many
persons/users express needs that are often overlooked or not understood in the health :,,ystem, and the
frontline care workers express.frustration in relation to care :,,ystems that prevent them.from opt;,nizing
their care delivery. We argue that complex adaptive systems and social constructionist theories provide
a link for knowledge translation that ultimately will lead to improved health care and better personal
health outcomes/experiences. We propose the Patient Journey Record System (PafR) as a conceptual
framework to tran:,,j<Jrm health care so that it supports and improves the experience ofpatients and im-
proves the quality ofcare through adaptable and interconnected provider information and care 5ystems.
Information technology, social networking and digital democracy are proposed as major solutions to the
need to put the patient and their journey at the centre of health and health care with real time shaping
of care to this end. Placing Pa!R at the centre of care would enable patients, caregivers, physicians,
nurses, allied health professionals and students to contribute to improving care. PaJR should become a

DOI: I0.40 l 8/978-l-60960-097-6.ch006

Copyright{) 20 I I, [GI Global. Copying or distributing in print or electronic forms without written permission of !GI Global 1s proh1b1ted.
 Patient Journey Record Systems (PaJR)

'discovery tool' of new knowledge arising.from different types of experiences ranging.from the implicit
knowledge in narratives through to the explicit knowledge that is formalized in the published peer re-
viewed literature and translated into clinical knowledge.

Referring to the patients journey is a very ap- THE PATIENT'S JOURNEY

propriate start. Travellers have always needed
help. How far must I travel? What route must I
take? Are there signposts along the way? Is there
a map, or must I find my way from landmark to
landmark? Is there someone to act as a guide, or
must I act as pilot and navigator, and who is in
charge? Will it hurt ifI 'bump' into something on
thisjourney? What happens upon arrival - will I
be a complete stranger in a strange land? http://
stanford welh,phere.comlgeneral-medicine-arti-
cle/the-patient-s-journey/503163 Posted Nov 18
2008 12:17am
The patient journey concept has been an emergent
phenomenon building on the notion of patient
centeredness over the past 15-20 years. It has
emerged from the dynamics of balancing the bio-
medical model with the biopsychosocial model,
and balancing the acute care models with chronic
care and community oriented patient centred mod-
els (Figure I) (C. M. Martin, 2007). The patient
journey concept recognizes that people make
journeys through different stages of health and
illness, through different parts of the health care
systems associated with different emotional and
physical experiences (C. M. Martin & Sturm berg,

Figure 1. Archetypal patient journeys underpinning the patient journey record system (Pa!R)

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Patient Journey Record Systems (PaJR)
2006; Sturm berg & Martin, 2006). The individual
patient journey is shaped by the systems in which
they live, which are strongly influenced by the
social and non-social determinants of health. A
range of compelling evidence from Canada and
other countries indicates that the social and eco-
nomic circumstances of individuals and groups
influence their health status and mortality as much
as or more than health care. These circumstances
affect the success rate of interventions to change
personal health behaviour, such as smoking and
diet, or of improved outcomes of chronic disease
management. Addressing health inequities is
strongly associated with the improvementofhealth
care outcomes (Martin CM & Kaufman T, 2008).
This patient journey takes place in a western
system where there is universal access to general
practice and comprehensive health care. The
patient journey starts from birth and early life and
ends in death. The journey of the individual is
through all stages of life, from wellness and risk
to disease and illness. The personal nature of this
unique individual journey encompasses biological,
psychological, social domains of experience.
Individual journeys occur with support and
interdependent relationships within their intimate
family networks, their social networks of peers,
friends and colleagues. Self care and the work of
managing health and illness increasingly takes
place with informational and disease manage-
ment support from chronic disease management
programs. Patients are increasingly connected
through patient interest groups, biogs and other
social networking sites. Individuals are located
within their social network, their culture, their
social and economic infrastructure. Such systems
are complex and often unpredictable, thus nar-
ratives are often the best way for individual and
relevant others to make sense of their journey.
The general practitioner and the primary care
team have a longitudinal journey with their patient
through phases of health and illness and stages of
care including health promotion and prevention,
risk management, diagnosis, treatment, self-
management and self-care. Such care pathways
pass through different care sectors from primary
and community care to secondary and tertiary
hospital based care. In this system continuity of
care is based on relationships, information and
connected management strategies. Community,
secondary and tertiary care providers have episodic
and sometimes long term care relationships. Doc-
tors and care providers can increasingly network
and learn from each other's experiences through
traditional continuing medical education, but
boosted by the immediacy of social networking.
Medical education increasingly needs to ad-
dress the shift to a patient journey framework
incorporating constituents of the patient journey
system and needs to activate two domains oflearn-
ing -cognitive and affective. Cognitive skills and
competencies 'facts' are the traditional medical
skills incorporating the process ofcomprehension,
application, analysis, synthesis and evaluation.
Skills to address the affective domains 'feelings
and fears' of the patient journey remain highly
important skills that need to be acquired by medi-
cal learners of all ages.
Social and economic circumstances of indi-
viduals and groups influence their health status
and mortality as much as or more than personal
health care. These circumstances influence per-
sonal health behaviour, such as smoking and
diet, improved outcomes of acute and chronic
disease management. Practitioners work in health
services which involve education, employment,
the economic, legal, welfare and political systems
over time.
The theoretical framework for this chapter is
based on a number of different theories including
social constructionism, structuration and complex
adaptive systems theory (Felix-Bortolotti, 2009;
Martin CM & Peterson C, 2008). Social construc-
tion ism is a discipline within sociology that is
based on sociological theories of knowledge that
consider how social phenomena develop in relation
to social contexts. A major focus is to uncover the
ways in which individuals and groups participate
77

in the creation of their perceived social reality. It
involves looking atthe ways social phenomena are
created, institutionalized, and made into traditions.
A socially constructed reality is one that is seen
as an ongoing, dynamic process. It is reproduced
by people acting on their interpretations and their
knowledge, which according to 'weak' construc-
tivists concerns subjective constructions related
to objective realities (Martin CM & Peterson
C, 2008). Complex adaptive systems theories
have emerged from physics, mathematics and
the natural sciences and permeated the organi-
zational literature accompany the sociological
streams of knowledge theory. They reflect the
non-linear interdependent dynamic reality of ac-
tors and agents which are continually adapting to
feedback (Felix-Bortolotti, 2009; C. M. Martin &
Sturmberg, 2009).
The methodology for this chapter draws on
the work of Walker and Hurt ( 1990). Walker and
Hurt affirm that scientific and technical written
communications are produced on a continuum
between the two extremes of formal and informal
communications (Walker & Hurt, 1990). They
characterized informal communications as im-
mediate fluid information; disseminator selected
and interactive. Examples would include biogs,
the informal and grey literature. Formal commu-
nications are characterized as public, permanently
stored and typically retrievable, relatively "old"
information that is primarily user selected and
non-interactive. This form of information can
be found in the formal peer reviewed literature,
although the boundaries are increasingly becom-
ing blurred with a proliferation of authoritative
biogs and online publishing of less formal and
or open access journals. In this chapter we in-
corporate the use of blogged narratives together
with a scoping of the peer reviewed literature.
Narrative and auto/biographical approaches
from within the social sciences associated with
post-modernism are employed in order to reflect
on how social actors conceptualise the ways in
which they make sense of, and re-present, the
78
Patient Journey Record Systems (PaJR)
social world (Sikes, 2007). We, as the 'actors' in
health care - patients, clinicians and informatics
experts - present our personal and patient narra-
tives in order to understand the importance of the
patient journey and the systems that support these
journeys. A scoping of the published literature on
the patient journey was conducted using 'patient
journey' 'patient journey narrative' as the key
search term on Pub Med, EMBASE, CINAHLand
Google. The 231 journal articles identified were
then filtered with additional terms: experience,
audit, quality improvement, system design and
information technology as the key search terms.
THE JOURNEYS
The chapter charts many patient centred journeys
in health care in order to explore the key leverage
points and constraints by which to improve patient
health and quality of life. First. we consider the
major focus of all health journeys - the patient
experience as they pass through phases of illness
and disease and stages of care. Second, we reflect
on the doctor -patient, doctor-doctor and doctor-
student experiences ofthe patientjourney through
their illnesses and the health care journey and the
constraints and enabling landscapes they encoun-
ter as they try to provide high quality services.
This gestalt of different experiences is, in fact,
the result of interactions among diverse agents.
Here, learning take place to reduce or increase
agent adaptability and selforganization, attending
not only to structures, but also to processes and
functions of complex systems (Jordon, Lanham,
Anderson, & Jr, 2010).
The Patient's Journey
The complexity of issues facing people with
chronic illness can be both demanding and demor-
alizing. Chronic illness care requires a response to
broad physical, psychological and environmental
issues including difficult social situations.
Patient Journey Record Systems (PaJR)
Bob the black country Brumm ie www.m idtids.
blogspot.com Saturday, 21 November 2009:
A couple of days ago I was taken to A&E at
Sandwell by paramedic. This was the result of
a "funny turn" a medical term when they can i
establish what caused it. I accidently tried head
butting our kitchen floor from a standingposition.
When they mentionedfunny turn I thought I better
get on stage quick before it wears off. I digress. I
possibly fainted but when I was lying on my side
on the floor I noticed the bottom edge ofour sink
unit and thought, "that is starting to break up".
The misses quick as a flash dials all the nines
then her mate from down the road. It wasn "t long
before I was on a trolley in A&E then relatively
quickly transferred to Medical Assessment Unit
where I was kept overnight fi_Jr observation. It
was early hours of the morning when I got a bed
so I was very tired. I was awakened every hour
with a bright light shining in my eyes followed by
blood pressure, pulse, temp ect. I had difficulty
getting back to sleep and this routine continued all
night. Come the morning I was, well; knackered.
I don 1 want to go into the gory details except
to point out the good bits and unfortunately the
bad bits. The good bits; they did a very thorough
job of checking me out. They were straight and
honest throughout even when the news was not
particularly good. The not so good bits. In the
morning they took away my bed and never found
me another. I was there all day with nowhere to lie
down. It is essential I stretch out during the day.
Although I askedfi_Jr a bed and told them why they
never took me seriously. So by late afternoon I was
in pain and really stressed out. I felt abandoned
and neglected. It wasn i until the wife started to
make a fuss that action started. The ward does
not have adequate washing facilities and I did
not have the motivation or strength at that time
to shower (http://midtids.blogspot.com/2009/11 I
patients-journey. html).
Bob describes his sense of feeling 'in pain,
and alone and powerless' in a big machine. Health
and illness are unique personal experiences in the
presence as well as in the absence of identifiable
pathologies. Individuals navigatetheirunique per-
sonal health and illness journeys through periods
of health and disease - journeys defined both by
personal narratives and the data traces they leave
within healthcare environments (such as family
practices or hospitals). Despite decades of patient-
centred research and education, people still suffer
from neglect by the health care machinery. While
a range of Iiterature refers to the patient journey
and there are multiple dimensions of the journeys
across all sectors of health care and conditions.
Complex systems theory supports the notion that
it is possible to identify user driven interventions
and system learning adaptive processes along the
journey that can improve patient experiences and
quality of care.(Leykum et al., 2007)
The journey is as much about the social and
cultural experience as the physical symptoms
and medical problem (Martin CM & Peterson
C, 2008). General practitioners can become
frustrated by the treatment of their patients in
that 'system'. Providing care for chronic illness
and multidimensional conditions requires whole
person comprehensive care, which address the
social nature of care as well as interventions that
are focused on disease. Unintended consequences
of health system changes such as 'contracting out'
services can be a devaluing little regard for the
relationships between people and their families
and those who deliver care.
Carmel Martin, General Practitioner has re-
cently worked in several countries:
Recently, while conducting regular primary care
out-of-hours weekend work in a particular country
where the work is contacted out to private compa-
nies, my experience with older sicker patients was
punctuated by frequent urgent relative requests
for visits and telephone calls with concerns about
79

their relatives' decline. Such concerns on the
week-end were delivered to a safety net service to
identify and refer urgent care needs to secondary
care and stabilize other needs. Some calls were
misplaced when family visited older relatives
who had been in deteriorating health during the
week and had either not sought help or their help
seeking had delivered 'weak signals' which had
not been picked up. Whether these weakcries for
help were based on physical disease deteriora-
tion, psychosocial or environmental contexts, the
only recourses on the weekend were: maintenance
strategies (ofmedication adjustment andpsycho-
social band-aid solutions); secondary care refer-
ral and admission; or long waits in Accident and
Emergency Departments.
People who are ill often are unwilling to seek
help and are embarrassed by an impression that
they 'have been bad' and they have not adhered
to medical or health promotion advice, which
have landed them in this situation. However, there
is the problem of guilt or frustration at always
having to seek help and 'bothering people' (C.
Martin, 1998).
Annette, an Australian patient:
But now I can see, had I have taken more care
earlier, it maybe wouldn 't be as bad as it is ... but
.... it always feels like you are bothering people.
Heather, an Australian patient:
I guess they (patients who are labeled as "chroni-
cally ill'') have got connotations ofalways being
at the doctor and being a pain in the arse.
A coping strategy adopted by many older or
chronically ill people is not to disclose the full
extent of their pain and suffering to avoid depen-
dency and stigmatization. This leads to delayed
help seeking, and emergency admissions or visits
to the emergency department (M. Martin, Hin, &
80
Patient Journey Record Systems (PaJR)
O'Neill, 2004). A patient journey record system
that allows people with chronic illness to seek
health advice early using an IT system that moni-
tors and feeds back their unique status would at
least, in theory, improve patient access to more
timely and less bothersome help seeking.
Conversely, some patients become 'profes-
sional patients' and live their illness thriving on
the attention or developing excessive anxiety or
dependency on the health system.
As Dr J says - they live their illness (C. Mar-
tin, 1998). Australian general practitioner and
co-author, Joachim Sturmberg sees that modem
technology and a patient journey record system
would assist some of the people who have trouble
living with illness.
Joachim Sturmberg - Australian General
Practitioner:
Bill is 88 years old, lives in a hostel, and volun-
teers on a daily basis at the nursing home where
his wife was cared for until her death 15 years
ago. Bill has many health problems. The one
of greatest concern to him is his shortness of
breath and increasing tiredness. Bill has severe
ischaemic cardiomyopathy as well as COP D, and
his medication management is making him dizzy
to the point offalling. Bill reduced his diuretic
medications as he could not cope with having to
rush to the toilet all the time, and he found that
leaving the pills away made him less dizzy, but over
a few days his shortness of breath became more
prominent, and his legs were swelling up above
his knees. Bill is well aware ofhis condition, and
he understands the limitations ofhis management.
He agreed to record his awakening weight, and
adjust his diuretic medications, and this 'trick'
is helping him to maintain a workable balance
between maintaining an acceptable control ofhis
heart failure and his desire to stay engaged with
his work in the nursing home. How nice would it
be to receive daily information about his physi-
cal parameters and his subjective wellbeing and
Patient Journey Record Systems (PaJR)
being able to tweak his management whenever
needed early, rather than having to see him in the
surgery with a major deterioration in his health?
Social Support
John - son of Gladys, aged 82, a lady with pneu-
monia - in a phone call to Carmel Martin while
working in the Out-of-Hours Service:
I am so concerned about my mother. I live 60
miles away and visit my mother on Sunday nights.
I just feel that she needs more attention during
the week and when I saw her (thi5) weekend, I
felt she had been let down. The doctor came and
went and just gave her some antibiotics, but she
isn i at all well. I feel that she should have been
treated earlier. I wish I could be more involved
in her care during the week. At the weekend it is
an OOH home visit which may take as long as 8
hours to be provided.
Social support can be simply defined as the
availability of people on whom patients feel that
they can depend. Currently, social support theory
recognises both structural and functional elements
ofinterpersonal relationships and social assets that
contribute to the provision of support. Structural
elements include the size, density, flexibility and
adequacy of an individual's network of intimates,
friends, colleagues and experts. Social embed-
dedness describes the degree and type of bonding
(such as trust) between participants. Functional
elements are the actual supportive acts received
(and provided) and people's perceptions of their
quality. Functions of support cover emotional,
practical, informational, appraisal and companion-
ship domains in human interactions. In practice,
these functions are often difficult to separate and
usually highly inter-correlated (House and Kahn
1985). Social support models link social, psycho-
logical and physiological levels of functioning.
Health is determined by the balance between
social, psychological and physiological stress
and the host vulnerability or resistance (assets or
resources).(C. M. Martin, 1998).
Improving Care
The literature reviewed identifies a whole world
of patient journeys with a considerable focus on
patient narratives on their experiences with exhor-
tations for physicians, health care providers and
health systems to refocus on such experiences as
central to care (Chapple, Ziebland, & McPherson,
2004; Lapsley & Groves, 2004; Pope C, Ziebland
S, Mays N, & 1999, 1999).
Educators are exhorted to improve clinical
education to sensitize students to the nature of the
patientjourney. (Clare & Bullock, 2003; Farqu-
har et al., 2005; Graves, Shue, & Arnold, 2002;
Maughan, Finlay, & Webster, 2001; McLeod,
2003; Muir, 2007; Powell-Tuck, 2009; Sturm-
berg, Reid, & Khadra, 2001; Sturm berg, Reid,
& Khadra, 2002; Vegni, Mauri, & Moja, 2005;
Wales, 2005, 2008)
What are we teaching our medical students?
By Beamon on 7/15/2009 4:00 PM:
The training ofthe young doctor has been subject
to much change in recent decades. Flexner s day
is done - although ifyou set up a medical course
now and promised to excel in Basic Sciences, then
you would be very very revolutionary, if a little
reactionary! Still, we try to stuff the knowledge
in, as much as we had to, but thankfully we are a
little more aware of the patient journey and ex-
perience. We particularly like to get our students
to see the other side.
Another perspective on the shift to a patient
journey record systems approach is described by
Joshi from the Indian sub continent. He makes
the case that approaches beyond current cognitive
skills of diagnosis to address context and affect
should be adopted as edifying tools for medical
students.
81

Ankur Joshi:
q[ten during the rendition and depiction ofknowl-
edge allied with medical sciences we emphasize
on 'what' and 'how' rather than unrevealing the
'why' ... ....... as this 'why' always beckons to the
neurons of our brains and creates an enduring,
immortal affinity to the subject.
·· When he set out, he did not know where he was
going,
When he got there he did not know where he was,
When he returned, he did not know where he had
been" (Columbus School)
Teacher should not be visualized only as a human
resource input, to act as a source of ieformation
& to transmit this ieformation to learners but
should be seen as a Jystem specialist to plan, steer
& implement a formal and ieformal educational
process. He should more be in a facilitator role
rather than to act as active guide.. The success
of educational system & teacher as system spe-
cialist may be measured by output specification
(effectiveness ofthe process to achieve the desired
outcome), efficiency (cost, time & resource !ipent)
& openness ofeducation system (sensitiveness to
external stimulus & environment). These three
parameters may be achieved by the formal and
ieformal incorporation of patients narratives,
pathways adopted by him/her during the illness
phase and psycho-socio-demographic consider-
ation while on treatment in the curriculum. This
approach may transform the bare lecture into
text-book plus eccentricity.
Incorporation of constituents ofpatient journey
system may kindle two domains oflearning-cog-
nitive and affective.
Cognitive Domains -This domain is related with
innate & inherent capacity of human race to
82
Patient Journey Record Systems (PaJR)
develop intellectual skills in response to internal
& external stimuli. This encompasses the process
to acquire, recall and recognize knowledge and
skills of the student. These domains can be fur-
ther divided into knowledge (ability to recall &
retrieve), comprehension (ability to visualize a
idea with itsfullest meaning), application (ability
to used in real time scenario by using knowledge
& comprehension), analysis (fragmentation of a
central idea into a meaningful & interpretable
finding), synthesis (ability to coherent & unified
several themes/sub themes to unison) & evaluation
(ability to judge the reliability, reproducibility,
efficiency, effectiveness utilities & merits of a
established criteria). Pa.JR does catalyze and
facilitate the process ofcomprehension, applica-
tion, analysis, synthesis and evaluation
Affective Domains - This taxonomic domain
deals with the interpersonal relationship or
communication skills and describes the learning
task associated with change in attitude, interest,
values & development of appreciation. In short
it is associated with receiving, responding &
internalization of an objective. Taxonomically it
can be farther categorized into receiving (con-
sciousness to aware a idea & willing to receive
it), responding (getting satisfaction by responding
owe to receiving), valuing (internalization ofthe
idea andpreferential commitment to percolate it),
organization (development of sound conceptual
frameworkoflearning in coherent and acceptable
fashion and acting upon it) and characterization
by a value complex (amalgamation of the value
with philosophy to transform it into a consistent
behavioral characteristics). PaJRs may light up
the process ofvaluing, organizing and ultimately in
theformation ofcharacterization ofvalue complex.
The learner :S· performance is a complex outcome
ofcurrent.flowing through various integrated and
internalizedcircuits ofthese domains. Contempla-
tion and introspection ofthese domains facilitates
the learning process by encouraging ~he learners
Patient Journey Record Systems (PaJR)
to think, resulting in the acquisition ofknowledge,
skills and attitude and PaJR undoubtedly does
provide an opportunity to do so.
Despite many years and many publications
across a whole range of physical and mental
conditions, and quality improvements activi-
ties, patient experiences of their journey remain
lonely, poorly heeded and frequently mismanaged
(Alarcon & Leetz, 1998; Andrew & Whyte, 2004;
Barnard, Hollingum, & Hartfiel, 2006; Baron,
2009; "Battling back from childhood sexual
abuse and surviving the journey," 1998; Binkley,
1999; Blondal & Halldorsdottir, 2009; Bond et
al., 2009; Centers, 2001; Curry & Stone, 1991;
Graves, et al., 2002; Griffin & Fentiman, 2002;
Hall, 2005; Harmel, 1986; James, Hess, Kretz-
ing, & Stabile, 2007; Jenkins, 2006; Kelly et al.,
2003; Kerfoot, 1998; Kiteley & Vaitekunas, 2006;
Kobayashi, 1997; Maughan, et al., 200 I; Mayor,
2006; McGrath et al., 2008; McN icholl, Dunne,
Garvey, Sharkey, & Bradley, 2006; Meadows,
Lackner, & Belie, 1997; Muir, 2007; Peterson,
2006; Powell-Tuck, 2009; Richardson, Casey, &
Hider, 2007; Rigaux, 2005; Rockwood, Wallack,
& Tallis, 2003; Storti, Lindseth, &Asplund, 2008;
Thorne et al., 2009; Vegni, et al., 2005; Ventegodt,
Andersen, & Merrick, 2003; Venter & Hannan,
2009; Wray & Maynard, 2008). The key message
from the literature is the ongoing need to refocus
and redesign care around the patient and his/her
journey across all sectors of health care for long
term and acute conditions.
Information technology, social networking and
digital democracy is proposed as a major solution
to the need to put the patient and their journey at
the centre of health and health care with real time
shaping of care to this end.
Social media on the Internet are empowering,
engaging, and educating health care consumers
andproviders. While consumers use social media
-- including social networks, personal blogging,
wikis, video-sharing, and other formats -- for
emotional support, they also heavily rely on them
to manage health conditions. The Internet has
evolved from the information-retrieval of "Web
1. 0" to "Web 2. 0, "which allows people who are
not necessarily technologically savvy to gener-
ate and share content. The collective wisdom
harnessed by social media can yield insights
well beyond the knowledge of any single patient
or physician. The outcome ofthis development is
"Health 2. 0" -- a new movement that challenges
the notion that health care happens only between
a single patient and doctor in an exam room.
The Web is becoming a platform for convening
people with shared concerns and creating health
information that is more relevant to consumers.
Social network\', ranging.from MySpace to :,,pecific
disease-oriented sites, are proliferating so rapidly
that new services are already under development
to help health consumers navigate through the
networks. Jane Sarasohn-Kahn, The Wisdom
of Patients: Health Care Meets Online Social
Media- CHCF.org Posted Nov 18 2008 12:] Jam
Social networking - that is groups of people
interacting in a dynamic system though the use of
digital technology - is a way forward to promote
knowledge and relationship management. Social
networking is increasingly utilized in health care,
comprising a range of strategies and practices used
to identify, create, represent, distribute, and enable
shared knowledge, either embodied in individuals
experiences or embedded in formal knowledge
systems or current practice (Eysenbach, 2008).
Groups of individual patients, medical students
and health professionals share the patient's need
to increasingly interact with and seek knowledge
and solutions offered by others in the network.
A web based user driven social network would
relax central control and make local adaptation
and strategic health workers feel more engaged in
the project such that it is truly user driven (Biswas
et al., 2008).
Rakesh Biswas-an Indian hospital physician's
perspective - promoting social networking and
83

e-logging solutions to lack of continuity in rela-
tionships and information and care management.
We need an information system that can seam-
lessly integrate different types of information to
meet diverse user group needs around the patient
journey.
Present day e-health systems encourage increasing
automation through human computer interaction
whereas health and healing require human to hu-
man interaction that simply needs to be augmented
by computers. This importance ofhuman to human
interaction and its augmentation by technology is
illustrated below with a single day hospital ward
scenario from a hospital physician consultants
e-diary (Note that care giver logs are often just
telegraphic information):
I) Relooked Bed JI ... students request. 50 year old
Male, Nephrotic syndrome with diabetes mellitus,
with his diabetic foot dripping pus on the bed. No
dressing since yesterday? Blood sugar values?
2) Bed I060yr Male, collapsed suddenly, cirrhosis
with end stage, didn i want to resuscitate but had
to for protocol as we had missed out on the DNR
earlier. Students had an exercise.
Another note a month later:
This was a month back I think ... can 't be sure ...
time flies so fast on the daily ward rounds. Most of
my E-logs remain unutilized. In fact /first started
making e-logs on my P DA chiefly to identify my
information needs as a physician before I gradu-
ally started realizing even patients had similar
needs and we all need to have integral solutions.
Relevance of daily E logs to solve individual
patient/health professional user needs:
I had seen the diabetic man in bed I I earlier on
his morning consultation rounds but he realized
84
Patient Journey Record Systems (PaJR)
that this patients blood sugar control had been
overlooked only after a medical student requested
him to have another re-look. He made a point in
his mind to inform this to hisjunior colleague, the
medical officer who would remain in the wards
(also at the same time making the telegraphic note
about the patient in bed I I in his personal diary).
Suddenly, at that point in time, the patient in bed
I0collapsedand he had to participate in his CPR
that was emotionally and physically draining
and he was relieved to escape to the outpatient
department (OPD)for the day
Ideas about Shaping an Ideal Future System
Based UponAPatientJourney Record Concept
Rakesh Biswas - Communicating valuable indi-
vidual patient data - the future:
ff this data were on a web portal (a kind ofvirtual
hospital filing system) as soon as the physician
entered it into his personal digital assistant (P DA),
the data would have matched with his other col-
leagues datafor the day regarding this particular
patient. His junior colleague (Medical Officer/
Senior Resident) doing just a file review on his
P DA would have noticed the note and acted on the
diabetic mans blood sugar ifit was high. Control-
ling it better may have benefited the wound more
than the systemic antibiotics that he was already
on (and which had doubtful local benefit although
again it is an issue that may be debated). This
technology offering a convenient local solution
to improving hospital communication among in-
house health professionals is evolving at present
in many hospitals.
Medical Students as a Vital Force in E Learning
and Improvement of Patient Care
The government generally thinks that it spends
too much money in Undergraduate Medical
training perhaps as these student doctors appar-
Patient Journey Record Systems (PaJR)
ently do not serve while they learn. However it
is the medical student who has the time to listen
in detail to their chosen individual patient (they
do not have to see and are not responsible for
all the ward patients unlike their overworked
houseman/resident seniors). Medical student logs
on their individual patients can be a vital source
of detailed narrative data on individual patients
which their consultant might often enjoy reading
and also benefit from daily. The medical student
who pulled the consultant to the bedside may as
well have entered his thoughts about his patient
on his PDA-elog that would have automatically
been reviewed by the consultant or his Medical
officer (Senior resident).
Continuity of information, management and rela-
tionships among physicians are key elements to
support physicians doing their work to support the
individual patient journey. The ideal system does
not exist and the previous two narratives reflect
the everyday challenges of delivering care in
everyday circumstances. Why the patientjourney
as described by patients is consistently less than
ideal, is the constant need to improve systems
of care through which patients needs to journey.
KevinMD blog US:
As for patients, be aware of the difficulties phy-
sicians face when trying to talk to one another.
Know your medications and medical history when
seeing a new specialist or receiving care in the
emergency room. Ensure that any new treatment
recommendations are appropriately communi-
catedwith your primary care physician. Our health
care 5ystem has plenty ofroom for improvement.
Simply making it easier for medical providers
to talk to both patients and each other would
represent a significant step in the right direction.
We have been working very hard at defining and
developing a much better "Patient Journey"
through our practice. The whole team have been
involved, as we have very much taken on board
your philosophy that the patient is like a "baton
in a relay race" and that every player in the team
has a re5ponsibility to avoid "dropping the baton"
by deliveringfabulouspersonal service -a smile,
eye contact, genuine interest and appreciation -
all that stuff
We organised an initial training session to dis-
cuss our views. We set aside the time to attend a
days training on "The Patient Journey" and we
then came back to the practice and made a big
effort to implement the ideas and revisit them at
periodic team meetings. However, we do tend to
keep slipping back into our old habits - we are
hwy most days and there just sometimes doesn t
seem enough time. Most ofthe staffare now mildly
complaining that they have forgotten the key ele-
ments ofthe journey and we seem to be losing the
enthusiasm. I don t want this to be yet another
initiative that got lost in the rush. Any hints? The
top 10 tips/or a Patient Journey Champion http:!I
www. coachbarrow. comlblog/customer-serv ice/
the-top-10-tips-for-a-patient-journey-championl
(date not supplied)
Medical social networking sites are flourish-
ing (Eysenbach, 2008) and shape learning about
how to care for patients in their med icaljourneys.
Physician use of social networking has rapidly
increased in parallel with patient networking.
For example, Sermo is the largest online physi-
cian community in the US. It:~· where practicing
US physicians-spanning 68 5pecialties and all
50 states-collaborate on difficult cases and
exchange observations about drugs, devices and
clinical issues. And find potentially life-saving
insights that have yet to be announced by conven-
tional media sources. Sermo is a real-time meeting
place where physicians get help with everything
from patient care to practice management. They've
described it as "therapeutic, " a "virtual water
cooler" and "vital to my everyday practice. "
Physicians on Sermo rank their colleagues for
85

the value of their postings and the quality of
their answers to posted questions. Highly ranked
community members are turned to for respected
answers and advice. (http://www.sermo.com/
about/introductionaccessed21 /2/20 I 0)
Health and Social networks and systems ad-
dressing the determinants of health are significant
influences on the patient journey. Thus networking
would build on existing and successful collective
enterprises to deliver after-hours care, improve
quality and safety of individual disease manage-
ment, and link with public health initiatives to
extend toward implementing strategies that ad-
dress the factors contributing to the genesis and
evolution of disease and health outcomes (Martin
CM & Kaufman T, 2008). In a well-functioning
system, well-being may be enhanced by social
interventions to counteract the determinants of
health. The latterdeftnitivelycalls for political will
on the part of all agents for effective intersecto-
rial collaboration and coordination. This is about
people, multiple levels of services, and allocation
of resources by the means of organizations and
policymaking decisions. It is about caring for and
about people in need of a wide range of services.
This includes the notion of population health in
the global sense of the term - clients, that is, pa-
tients who are receiving the care in order to restore
or to maintain their health status, as well as the
needs of direct care service providers, that is, a
multidisciplinary group of health professionals in
the community (Felix-Bortolotti, 2009).
THE PATIENT JOURNEY RECORD
(PAJR) CONCEPTUAL FRAMEWORK
Through an iterative process of immersion and
crystallization, the team developed the concept
of the Patient Journey Record System as an
overarching concept that requires greater explicit
attention in the future to move beyond a current
narrow focus on disease management.
86
Patient Journey Record Systems (PaJR)
Conceptual Framework for
Developing Patient Journey Systems
from the User Perspective
To enable a better understanding of the patient's
health and illness experience over the trajectory
of his or her chronic disease, we propose the de-
velopment of the Patient Journey Record (PaJR)
system. The PaJR will enable the development
of systems to directly shape care by integrating:
I. personal narratives ofthe inner health/illness
expenences
2. health care narratives of disease and treat-
ment - narratives of the individual, their
family and caregivers and health professional
narratives
3. the personal and other narratives oflife tra-
jectory of school, work, and social support
and networks, including the determinants of
health (C. M. Martin, 1998).
Personal Narratives
Health is a dynamic interplay of different compo-
nents and can be understood as a balance between
the biological, the psychological and social viewed
hrough personal sense-making narratives. As
patients make their way through the health care
system, they traverse their personal journeys and
narratives with their health practitioners and other
professionals as well as that of fellow patients
they encounter along the way.
Sensemaking is the ability or attempt to
understand and clear situations. More exactly,
sensemaking is the process of creating situational
awareness and understanding in situations of
high complexity or uncertainty in order to make
decisions. It is "a motivated, continuous effort
to understand connections or disconnections and
disjunctions ( which can be with and among people,
places, and events) in order to anticipate their
trajectories and act effectively" (Klein, Moon, &
Hoffman., 2006). By far the most common form of
Patient Journey Record Systems (PaJR)
sensemaking is the informal and formal use ofnar-
ratives. ''The narrative provides meaning, context
and perspective for the patient's predicament. It
defines how, why and in what way he or she is ill.
It offers, in short, a possibility of understanding
which cannot be arrived at by any other means"
(T. Greenhalgh & B, 1998).
Narratives of Care
The patient's narrative is not the only part of the
sensemaking process as doctors; nurses and other
clinical and non-clinical participants also have
their own narratives. Bringing them together
allows participants to better understand what is
happening to them and others, what it means to
them and in doing so bridges both cultural and
professional barriers (T. Greenhalgh, 2002).
Sensemaking in the cognitive domains is central
skill of medical decision-making in diagnosis,
treatment and management. Patient centered care
(often summarized as facts, fears and feelings)
also required an affective component - this do-
main deals with the interpersonal relationship or
communication skills and describes the learning
task associated with change in attitude, interest,
values & development of appreciation.
Narratives of Systems in
Which We Operate
At the core of the system is an understanding of
local population health determinants and inequities
of health outcomes, as well as local primary care
demands for services. With the developments in
information technology, the horizontal intercon-
necting oflocal providers is realistic and feasible;
such interconnecting is essential to collectively
address local needs rather than, as at present,
individuals and groups working in local organi-
zational silos. Networking builds on existing and
successful collective enterprises. Thus systems
and care need to be provided by interconnected
practitioners, providers or agents 'at work' in their
different practice settings or sectors bringing with
them, their own set ofindividual and professional
values (Felix-Bortolotti, 2009). This networking
would expand existing and successful collective
enterprises to deliver after-hours care, improve
quality and safety of individual disease manage-
ment, and link with public health initiatives to
extend toward implementing strategies that ad-
dress the factors contributing to the genesis and
evolution of disease and health outcomes (Martin
CM & Kaufman T, 2008).
Evidence is emerging ofthe successes of social
networking in providing peer and informational
support in an interactive user driven environment
(Brownstein, Brownstein, Williams, Wicks, &
Heywood, 2009). Evidence is also emerging about
care at home through telehealth or other informa-
tion technology modalities to support those who
need ongoing health care as they journey through
more unstable and complex phases of illness
(Darkins et al., 2008). In relation to health appli-
cations, there has been a broad adoption of Web
2.0 technologies and approaches in the form of
professional and personal use of electronic health
records - EHR and PHR (see glossary for discus-
sion of terms). The use of Web 2.0 technologies
and/or semantic web and virtual reality approaches
can enable social networking and health learning
within and between these user groups and clinical
carers (Eysenbach, 2008). These developments are
based on a wide range of research and research
and practice disciplines, and are beyond the scope
of the majority of clinicians who are beginning
to engage, and thus a operational framework is
an important starting point. In addition, we argue
that there is immediate need for a frame ofrefer-
ence in order to design patient journey systems
for individually tailored care that can address
unmet needs in current and future health and e
health systems, building on existing knowledge
in areas such as chronic disease management
(Dorr et al., 2007).
87
I Patient Journey Record Systems (PaJR)
CONCLUSION
Individuals traverse their unique disease and ill-
ness pathways through life stages, health systems,
and external social and physical environments.
There are potentially numerous care relationships,
predictable and unpredictable, with positive and
negative influences through which the patient
must navigate. This is particularly the case for
people experiencing phases of illness instability
whose decline into hospital admissions could
be prevented by timely interventions. Patient
journeys take place in systems and these systems
need research, education and ongoing designing.
A PaJR system is proposed to provide a concep-
tual framework to purview ongoing activities to
ensure patient-centredness in health systems. All
in all there is a very strong case for a paradigm
shift to placing the patient journey at the centre
of knowledge generation and when translated
could substantially improve health care systems.
Patient Journey Record Systems as proposed,
would encompass many existing developments in
information technology supporting self care and
ambulatory care, and to act as a frame of refer-
ence for future developments of technology and
shift to a systems based approach to health care.
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