Care Navigation in Older People with Multimorbidity
Feasibility and Acceptability of using ICT
Jolien Vos
1,*
, Conor Linehan
2
, Kathrin Gerling
3
, Karen Windle
1
and Niroshan Siriwardena
1
1
School of Health and Social Care, University of Lincoln, Brayford Pool, Lincoln, U.K.
2
School of Applied Psychology, University College Cork, Cork, Ireland
3
School of Computer Science, University of Lincoln, Brayford Pool, Lincoln, U. K.
1 RESEARCH PROBLEM
1
Recent years have seen significant changes in the
age profile of populations of Western European
countries, where more people are living longer. In
many ways, an aging population reflects progress
(i.e., in health care and political stability), and is
something to be proud of. However, it also raises
concerns; while people are living for longer, they are
not necessarily living well for longer.
Incidence of long-term health conditions (LTCs)
increases linearly with age (Office for National
Statistics [ONS], 2013). Further, the chances that
one is diagnosed with more than one LTC
(multimorbidity) also increases with age (DH,
2012). Health and social care systems were initially
not designed to support people with multimorbidity.
These patients are in need of integrated, on-going
care. Patients, with multimorbidity, need a seamless
connection between systems (i.e., health and social
care) as well as between the different people
involved (i.e., providers). Rather, health and social
care systems present patients with a variety of
options for highly specialised care, provided at
different settings (Health Foundation [HF], 2014). In
the health care system, each body system has its own
scientific discipline, resulting in several specialisms
and even sub specialisms. In the social care system,
the list of services is constantly expanding.
Patients currently have little to no guidance in
finding their way through this care system maze.
They are expected to navigate through the different
options (Albert, 2012), building, as it were, their
‘personal care network’ (PCN) in relation to the
multiple LTCs they have. It is unclear how patients
do this, what those self-composed PCNs look like,
how they are structured or how the different people
involved communicate with one another.
Accessing the ‘right’ type of care, at the ‘right’
time and in the ‘right’ place (care navigation) is
necessary if we want to optimise patients’ well-
1
* Corresponding author: jvos@lincoln.ac.uk
being. Besides causing poor patient satisfaction
(Albert, 2012), difficulties in navigating the care
system also lead to delays in access to services,
inappropriate use of services and inadequate use of
resources (Bhandari and Snowdon, 2012). Care
navigators (people who support patients in finding
their way through the system) are beneficial in the
context of single diseases (Ferrante, Cohen &
Crossen, 2010). Their widespread use in primary
care for patients with multimorbidity is however not
without obstacles (Albert, 2012; Ferrante et al.,
2010). For instance, in the context of
multimorbidity, care navigators tend to be involved
for long periods of time. The number of staff needed
to support this growing group of patients is almost
impossible to cover.
A promising opportunity to address this
challenge is that of Information and Communication
Technology (ICT) (Czaja, 2015; Marchibroda,
2015). Research has shown that ICT can provide
valuable opportunities for older people, especially
by supporting age-related needs (Goodman-Deane,
Keith and Whitney, 2009), while also reducing the
cost of health care (Khosravi and Ghapanchi, 2016).
However, there are no insights into the benefits of
ICT on navigation through the care system.
This issue is addressed by my PhD research,
which explores the feasibility, acceptability, and
requirements establishment to support the design of
ICT interventions to support older adults with
multimorbidity to independently navigate the care
system. To this end, a five-step research process has
been implemented.
Firstly, we bring together the existing literature
around care navigation in older people with
multimorbidity (1). We then aim to visualise PCNs
of older people with multimorbidity (2) and gain an
understanding of how these PCNs function (3). In
the fourth phase of the PhD we investigate how ICT
can provide a sustainable alternative for care
navigation support in older people with
multimorbidity (the end-users) (4). This includes the
identification of end-users’ needs and requirements
Vos, J., Linehan, C., Gerling, K., Windle, K. and Siriwardena, N.
Care Navigation in Older People with Multimorbidity - Feasibility and Acceptability of using ICT.
In Doctoral Consortium (DCICT4AWE 2016), pages 15-24
15
for such an ICT support tool. The fifth phase
concludes this PhD by producing usable personas of
older people with multimorbidity (5).
The hands-on design phase of the ICT tool for
navigation is beyond the scope of this PhD.
However, the output of this PhD will fill the gaps in
knowledge with regard to PCNs and care navigation,
provide suggestions on how to improve care
navigation and deliver usable personas and
requirements for design teams focussing on older
people (with multimorbidity).
Even though these issues are occurring on a
global scale, this PhD mainly focusses on the
situation in England.
2 OUTLINE OF OBJECTIVES
The overall goal of this PhD is to outline
requirements for the development of an ICT support
tool for care navigation. In order to reach a feasible
and acceptable support tool to help older people with
multimorbidity navigate the care system, the
following objectives were set:
1. Conduct a Scoping Review: Synthesise and chart
the current literature regarding care network
navigation in older people with multimorbidity.
2. Visualise PCN Data: Visualise the structure of
‘PCNs’ (i.e. the network that the patient with
multimorbidity builds to get the care he/she
needs) using quantitative data. The visualisation
is to show the main actors (‘who’) involved in
the care for the patient, their frequency of contact
(‘when’) and the ways in which people interact
in this network (‘how’).
3. Understand the PCNs: Gain in-depth
understanding, through qualitative data, of how
PCNs function. This includes information on
obstacles patients encounter when navigating
through their PCN, identification of the support
they need to make the navigation as easy as
possible, etc.
4. Integration of PCN information: Translation of
the data into personas. The personas created in
this study can then support prototyping of an ICT
tool for care navigation support.
3 STATE OF THE ART
Global increases in life expectancy contribute to the
growing number of older people. The WHO (2014)
reported, globally, an average increase of six years
in life expectancy between 1990 and 2012. The
prevalence of LTCs is linked to age, reaching almost
70% in the age group of 75 years and above (ONS,
2013). One quarter of people in England with a LTC
and aged 60 years and older reported having two or
more chronic conditions (multimorbidity) in 2009
(DH, 2012). With the second wave of baby boomers
soon entering the older age groups, the amount of
people diagnosed with multimorbidity is expected to
continue its rapid increase over the next years (DH,
2012; Khosravi and Ghapanchi, 2016).The rise in
multimorbidity is not confined to England. Across
countries all over the world multimorbidity is
becoming the norm rather than the exception (Fortin
et al., 2007).
3.1 Challenges in the Care Landscape
Health and social care systems face significant
challenges in adapting to these population trends
(Khosravi and Ghapanchi, 2016). Four of the main,
but strongly interlinked, challenges are outlined
below.
Firstly, today’s care delivery is characterised by
specialisation (Smith et al., 2012; WHO, 2008).
Specialisation of health and social care leads to
people being trained and qualified to provide
particular forms of care. As care becomes more
specific medicine evolves specialisms and sub
specialisms to cater for this. In the United States
nine times more specialisms and subspecialties in
medicine were reported in 2011 than in 1960
(Detsky et al., 2012). The US is not the only country
with high numbers of specialties. The UK, for
instance, is amongst the top three countries with
both the most specialisms and sub specialisms
registered (GMC, 2011). Increased specialisation is
reported to enable higher quality of care (GMC,
2011). In the US, the drive towards specialism is
praised because of the link it shows with
improvements in patient outcomes (GMC, 2011).
However, specialisation is often associated with
fragmentation (Albert, 2012; Ravenscroft, 2010)
which complicates working within health and social
care as well as between these systems (Ravenscroft,
2010; Ferrante et al., 2010).
Secondly, the changes in population dynamics
contribute to increasing care demands and changed
types of care needs. The changing nature of diseases
(i.e. from acute diseases to chronic conditions)
demands different structures of care and integrated
skills (Starfield, 2011). The current lack of
integration and coordination of care frequently
results in the need for patients to move within,
DCICT4AWE 2016 - Doctoral Consortium on Information and Communication Technologies for Ageing Well and e-Health
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between and beyond different parts of the system
(navigating the system). This is especially true for
people with multimorbidity (HF, 2014). Some of
their specialists are located in the hospital, others are
based in the community, yet another group might
fall under third sector care and relatives often
provide informal care. Previous research found that
patients with multimorbidity find navigating these
different parts of the care system burdensome and,
all too often, frustrating (Bhandari and Snowdon,
2012; Jackson et al., 2012; Ravenscroft, 2010). Yet,
it remains unclear how these patients can be
supported in this task of navigation.
Thirdly, today’s care landscape has moved away
from the ‘disease oriented model’ that was mainly
concerned with curing and treating single events or
acute diseases. The focus is now on patient-centred
care (DH, 2012; Fortin et al., 2007; NHS
Improvement, 2013; Smith et al., 2012; WHO,
2008). This model places patients at the core of the
care plan and encourages them to take an active role
in the management of their health. Considering the
changed dynamics of our society, the patient at the
centre of such a care plan is frequently an older
adult, with LTCs, receiving care at multiple sites
(Carla and Coleman, 2010). As such, patient-centred
care organises care around the older adult with
multimorbidity, but it often remains the patient’s job
to bridge the gaps by navigating within, between and
beyond different parts of the care system. In order to
do this (i.e., successfully navigate and be actively
involved in their care), patients need to be
empowered and well-informed. However, currently
there is little to no information for patients with
multimorbidity to help them navigate the care
system.
Fourthly, care navigation support, if at all
available, currently takes the form of a ‘person’
assisting the patient in their navigation task.
Depending on the literature, the term to refer to
these people differs slightly. Commonly used terms
include care navigators, patient navigators,
community navigators and case managers. All of
these roughly carry out the same tasks. These roles
have been successfully implemented in cancer care
settings and recently demonstrable benefits are also
shown in patients with single LTCs such as COPD
(Jackson et al., 2012). The on-going use of care
navigators more widely in primary care or in
complex chronic care settings (e.g. multimorbidity)
has been limited. However, the problem when
encountering multimorbidity is that it is not just a
sum of LTCs (Blozik, van den Bussche, Gurtner,
Schafer and Scherer, 2013; Perruccio, Katz and
Losina, 2012; Sinnot, Mc Hugh, Browne and
Bradley, 2013). For example, common LTCs have
care pathways, but when someone is diagnosed with
multiple LTCs, these pathways may interfere. The
few primary care navigator programmes that were
conducted in this context, further reported obstacles
relating to both implementation and sustainability of
the program (Ferrante et al., 2010).
3.2 Aging in a Digital Society
An increasingly popular field that is looked at for
support in tackling today’s health and social care
challenges is this of ICT. Just as our population
dynamics changed over the last decennia, so did the
environment in which we age. Whereas the early use
of computers was restricted to ‘expert’ users
(Campbell-Kelly, Aspray, Ensmenger and Yost,
2013) today programming skills and expertise are
not necessary in the generic use of a computer
(Wright and McCarthy, 2010). As such, we are
facing an aging population in an increasingly digital
era.
3.3 Designing for Older People
The possibilities ICT holds for health and social care
have not gone unnoticed. The improvements it can
bring to the quality of, especially, later life have also
been acknowledged (Goodman-Deane, Keith and
Whitney, 2009). It can for instance support the
creation of social networks, transform services to
help people live independently at home for longer or
empower and increase participation (Age Concern
and Help the Aged, 2009).
It is often said that ‘the full potential of ICT for
health and social care in older people has not yet
been examined’, but this can only be realised in the
first place if the systems and products are adopted
and used appropriately by this group (Czaja, 2015).
Since ICT is no longer restricted to ‘expert use
(Wright and McCarth, 2010), one cannot always
assume a certain set of skills or knowledge will be
present in the user. This might be particularly true
for people in the older age groups.
The evidence regarding the use of ICT in care,
and especially in later life, is ambiguous (Wandke,
Sengpiel and Sönksen, 2012). Some studies show an
increasing amount of older people using ICT
(Wagner, Hassanein and Head, 2010) and being
aware of its benefits (Age Concern and Help the
Aged, 2009) others are more reserved. Inconsistency
in results might be due to how ‘age’ or ‘older
people’ is conceptualised or which dependent
Care Navigation in Older People with Multimorbidity - Feasibility and Acceptability of using ICT
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variable is studied (Wagner, Hassanein and Head,
2010). However, regardless of the exact numbers,
the use of ICT in daily life, and in care settings
specifically, is likely to rise (Czaja, 2015).
Moreover, the current group of middle aged people
are the older old of tomorrow, which makes research
into digital inclusion and designing for older people
a priority today.
The UK government, as others, acknowledged
the importance of the digitalisation. In 2012 the
‘Government Digital Strategy’ was published,
outlining how it will make government services
‘digital by default’ (GOV, 2012). Digital by default
refers to ‘digital services that are so straightforward
and convenient that all those who can use them will
choose to do so while those who can’t are not
excluded’ (National Audit Office [NAO], 2013).
However, this is easier said than done. A digital
divide, albeit it relating to education or income, can
create differences in access to technology. The same
can be said about usability of technology systems
among older age groups of the population (Czaja,
2015). The benefits and impact of ICT largely
depends on how well it is designed (Goodman-
Deane, Keith and Whitney, 2009). In the case of
older people, well-designed systems require a
multidisciplinary team (Khosravi and Ghapanchi,
2016) since computer use by older adults is a
multidisciplinary topic by nature (Wagner,
Hassanein and Head, 2010).
3.4 Digital Tool for Care Navigation
With a focus on patient-centred care, the care
landscape displays a partnership model. Managing
one’s health has become a shared responsibility in
which patients are expected to play a more central
role in the care plan (Czaja, 2015). This requires
patients to be well-informed and empowered. Both
of these elements can be established and
strengthened through ICT, but only if the technology
used is suitable and accessible for the patient. That is
exactly what the field of Human Computer
Interaction (HCI) is concerned with. Although older
and younger users might share certain characteristics
(e.g., they use the internet for roughly the same
purposes), it is important to identify the differences
and especially how these impact older people’s use
of ICT (Wagner, Hassanein and Head, 2010). HCI
for older people has indeed become its own field and
numerous projects are providing information on
older people and the use of ICT. However, the
information with regard to older people with
multimorbidity is scant, considering the amount of
people this applies to.
Multimorbidity, as discussed earlier, poses its
own unique set of challenges. To reach digital
inclusion of these patients, their needs, experiences,
and changes in physical and cognitive abilities need
to be known. When designing systems to support
older people with multimorbidity in care navigation,
chances are that many designers are almost
everything that the end-user is not. They are likely to
be fit, healthy and relatively young professionals,
engaging with elaborate types of technology on a
daily basis. The end-user of their yet-to-be-designed
system on the other hand, is probably less familiar
with novel technological applications. The end-user
is likely to have age-related changes in physical and
cognitive abilities. Gaining this understanding is the
first step in the process of designing a feasible and
acceptable care navigation tool for them.
4 METHODOLOGY
To deliver requirements for the design of a feasible
and acceptable navigation tool for older people with
multimorbidity, the following information needs to
be known: what problems do these patients
encounter; how do they currently navigating the care
system; what do their PCNs look like and what do
they need the navigation tool to do for them? As this
information is currently missing and there are no
digital tools to aid care navigation for older people
in England, this PhD was set up. Four phases (see
section 4.2) compose this PhD to thoroughly answer
the following question: “Navigating the care system:
What is feasible and acceptable with regard to the
use of ICT to support older people with
multimorbidity?”
4.1 Theoretical Framework
Three theories underpin the PhD: the person-centred
care model (1), patient empowerment (2) and
experience centred design (3). Although these
theories stand in their own right, within this PhD
they are strongly interlinked. Based on these three
theories, we developed the ‘Patient Centred Design’
framework (figure 1).
Person-centred Care is care delivered and
organised in partnership with the patient (and his/her
relatives) and around the patient. It focuses on the
patient as a ‘whole’, his/her needs and his/her
strengths. Four main principles underpin this care
model, namely treating people with dignity, respect
and compassion (1), deliver coordinated (2) and
DCICT4AWE 2016 - Doctoral Consortium on Information and Communication Technologies for Ageing Well and e-Health
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Figure 1: Framework of Patient Centred Design.
offer personalised (3) care, support or treatment and
enable patients (HF, 2014). If we are to deliver care
organised around the patient, person-centred care,
rather than around the disease, patients become an
active player in their care plan. They are seen as
experts in their personal life and encouraged to take
an active role in setting out the care plan. In order
for them to do this, they need to be provided and
supported with tools to help them in this role, they
need to be empowered. Patient empowerment is a
process as much as it is an outcome. Patients are
empowered when they are supported in their
development of knowledge, skills and confidence to
effectively manage (including decision making) their
own health (HF, 2014). The World Health
Organisation (WHO) defined patient empowerment
as: ‘A process in which patients understand their
role, are given the knowledge and skills by their
health-care provider to perform a task in an
environment that recognizes community and cultural
differences and encourages patient participation’
(WHO, 2009).
Patient empowerment directly links to person-
centred care as it is one of the four key principles for
this care model (HF, 2014).
New technology can support patient
empowerment and person-centred care. However, ‘a
tool’ will not provide the ‘whole answer’ (WHO,
2012), especially if that ‘tool’ is designed with
limited input from the intended user. We need to
‘shape systems and technology, in the direction of
collaboration and co-production between patients
and the health system’ and we need to ‘use
technological and other means to increase
knowledge generation and exchange from patient to
patient.
Just like ‘person-centred care’ puts the people at the
centre (HF, 2014) of their care, ‘experience-centred
design’ places the users at the core (Wright and
McCarthy, 2010). It is exactly this idea of giving
end-users a voice throughout the designing process
that is the core of experience centred design
(Wilcox, Hur and Miller, 2010). In this particular
case, those people aged 55 years or older and living
with multimorbidity are at the centre. As such, it is
almost person-centred care in the design setting
using empowerment both as a process and an
outcome.
4.2 PhD Outline
This study uses a mixed methods approach to
investigate the feasibility and acceptability of ICT to
support care navigation. Underpinned by the
pragmatist paradigm (Polit & Beck, 2010;
Tashakkori & Teddlie, 2003), mixed method
research typically integrates both qualitative and
quantitative methods (Creswell, 2009). A
combination of both techniques was applied to
enrich data analysis and provide integrated results.
In the first phase of the PhD, a scoping review
synthesises the evidence of current research in the
field. The second and third phase of the PhD
respectively involves quantitative and qualitative
data collection. Individuals who aged 55 or over,
living in England and diagnosed with at least two
LTCs are invited to participate in the questionnaire
(second phase). The type of LTCs is not specified
and both physical and mental conditions are
considered. Questionnaire data are analysed using
Gephi for the visualisation of the PCNs and SPSS
for descriptive statistics for the PCNs.
Participants for the interview (third phase) are
selected through the questionnaire. Those who
indicated an interest for the interview and are living
in Lincolnshire (England) were eligible. The
interviews are audio recorded and transcribed
verbatim. After transcription, data are analysed
using NVIVO for framework analysis. The fourth,
and final, phase integrates the quantitative and
qualitative data.
The study received ethical approval from both
the University of Lincoln as well as the NHS ethics
committee.
4.3 PhD: Research Plan
A specific instrument for data collection and/or
integration was developed for each phase of the
PhD. The four instruments are discussed below.
Care Navigation in Older People with Multimorbidity - Feasibility and Acceptability of using ICT
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4.3.1 Phase One: Data Chart for Literature
Scoping reviews aim to cover the available literature
in breadth rather than in-dept. They are used when
the topic under study is broad and not precisely
confined. In this PhD a scoping review was used to
examine the extent, range and nature of research
activities and summarise research findings and
identify gaps (Arksey and O’Malley, 2005). Because
of their focus on coverage in breath, different study
designs were included, without too much focus on
the quality of the different studies (Arksey &
O’Malley, 2005). However, to ensure the quality of
the literature synthesis, a systematic approach for
literature selection and data extraction was used. The
charting framework (appendix 1) for data extraction
was designed to capture data from both grey and
published literature.
4.3.2 Phase Two: Questionnaire
A specific questionnaire for self-completion was
developed for the study as no existing questionnaires
were found suitable. The study aimed to visualise
PCNs of patients with multimorbidity. Social
Network Analysis (SNA) theoretically underpins
this phase of the study. SNA investigates the social
structure of networks, usually social networks. In
this study SNA, egocentric SNA in particular, is
used to analyse the ‘care networks’ of older people
with multimorbidity. Starting from the individual
patient, we look at his/her relationship with the
actors (carers) that are present in their network. SNA
uses two kinds of tools from mathematics to
represent the information: graphs and matrices
(Hanneman and Riddle, 2005). A complex series of
algorithms and relation algebras results in matrices
and graphs. Graphs are, in this case, the visual
representation of a social network. Matrices are the
numerical output of network information. Gephi was
found to be the most suitable visualisation software
to produce graphs of individual PCNs. Numerical
output is accomplished through the use of SPSS.
Because we use SNA, questions had to be
phrased in such a way that they prompted
participants to elicit information based on their
memory. We sought information that would help us
answer the questions of who the patient has contact
with in relation to his/her care; why these carers are
relevant to them; what the frequency and type of
contact (e.g., face-to-face) generally looks like. All
three, health, social and informal care were inquired,
prompting patients with different types of providers.
The answer options relating to health and social care
providers were based on the list used by Personal
Social Services Research Unit (PSSRU) in their
2010 report on ‘Unit Costs of Health and Social
Care’ (PSSRU, 2010). The options relating to
‘informal care’ were based on studies around social
support. To put the data into context, descriptive
statistics and numerical outputs were used. Firstly,
sociodemographic questions were based on the final
recommendations published in the white paper ‘Help
shape tomorrow’ for the Consensus 2011 (ONS,
2009). Secondly, participants were presented with a
list of potential LTCs and had to indicate those that
apply to them. The LTC list was based on the ‘Long
term health conditions 2011’- report from the DH
(2011). No sample size and power calculations were
done as this is uncommon in SNA and no detailed
community data relating to multimorbidity were
available.
An initial draft of the questionnaire was brought
to the Healthier Ageing Patient and Public
Involvement group. Based on their feedback, the
questionnaire was adjusted before pilot testing. The
pilot test was conducted amongst two members of
another Patient and Public Involvement group, two
academics who were independent and unfamiliar
with the research and three members of the public.
Their feedback led to final changes to the
questionnaire before it was rolled out in England.
The final questionnaire (appendix 2) is available
online and paper copies can be requested.
Three main ways are being used to disseminate
the questionnaire. Firstly, the questionnaire link is
spread through social media. Secondly, religious and
non-religious organisations are actively approached
by email to help with the dissemination. Thirdly,
awareness of the study and the questionnaire is
being raised among 101 family (general) practices in
Lincolnshire. The latter is done to further assure that
patients eligible for interviews are reached. The
questionnaire is available for approximately a total
of 10 months.
4.3.3 Phase Three: Interviews Topic Guide
The questionnaire is put in place to answer the
questions on ‘who’ constitutes the PCNs and to
some extent ‘why’. Additional in-depth information
on perceived obstacles, current behaviour in
navigation and data on the way in which PCNs
function is needed to reach the goal of this study.
Semi-structured interviews will address these
aspects and enrich the data from the questionnaire.
An initial interview protocol was designed based on
findings from the scoping review and the study
DCICT4AWE 2016 - Doctoral Consortium on Information and Communication Technologies for Ageing Well and e-Health
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purpose. After reviewing a set of 50 completed
questionnaires, additions were made to ensure that
interviews complement the questionnaire data. The
final topic guide (appendix 3) will be open to
modifications if and when previous interviews
indicate to do so.
Before each interview, participants’
questionnaire data will be reviewed. This helps the
interviewer gain a first ‘picture’ of the patient’s PCN
and makes the interview more personal to the
participant.
4.3.4 Phase Four: Data-driven Personas
Apart from using multiple techniques for data
collection and analysis, mixed method research
requires an integration of the results. By integrating
the statistical and thematic techniques, the
understanding of the issue is strengthened (Plano
Clark, 2010).
Initially the ‘integrative framework for inference
quality’ as presented by Teddlie and Tashakkori
(2009, p. 301) is used to assure thorough integration.
After initial analysis of the data and evolution of the
study, the creation of personas emerged as a
valuable way to present the integrated data. This will
make the research output concrete and usable.
Especially since, currently, no data-driven personas
in HCI reflect older user with multimorbidity.
‘Personas’ were introduced in the HCI and
design environment by Cooper (1999). A persona
represents a group of users, written in the form of
a detailed narrative about a specific, fictitious
individual (Miaskiewicz, Sumner and Kozar,
2008). It is almost a model of a user that focuses
on the individual’s goals. That means that
personas are not descriptions of real, single nor
Figure 2: The Five Phases of the Persona Lifecycle (Adlin
and Pruit, 2010).
average users, but they are also not just fantasies
(Blomkvist, 2002). Although their popularity
increased, specific guidance on how to create solid
personas is scant. Our main steps in the creation of
the final personas rely strongly on the model (figure
2) presented by Adlin and Pruitt (2010).
In particular the stage of conception and
gestation will be relevant to our process of persona
development. At this stage, data will be turned into
information and information, in its turn, into
personas (Adlin and Pruitt, 2010). To help us build
strong and valid personas, six steps are provided
by Adlin and Pruitt (2010) in this second phase.
Initially an ad hoc persona will be created quickly,
capturing the current thinking about the users and
what they need. This is often largely based on
assumptions, but provides a first structure for data
processing (Adlin and Pruitt, 2010). Secondly, the
data will be processed by looking for reoccurring
themes in the data, segments, etc. This results in
different categories and subcategories of personas.
Based on this process, the third step involves the
creation of skeletons. These are bullet point lists,
highlighting important data points in the
(sub)categories. In the fourth step the skeletons will
be prioritised according to relevance and importance
to the study. Afterwards, the most relevant skeletons
are to be selected and created into solid personas,
which are subject to validation. Validation will be
done by checking the personas with the initial data.
To be valid, final personas need to reflect the data
(Adlin and Pruitt, 2010).
5 EXPECTED OUTCOME
By addressing a gap in the literature around care
navigation in older people with multimorbidity, this
PhD is expected to add to both the field of health
and social care and the field of HCI in the following
ways:
Firstly, the scoping review summarised the
‘type’ of support older people with multimorbidity
need to efficiently navigate through the care system.
Only one previous study provided information on
the use of care navigation support for older people
with multimorbidity. Delivering this support through
a care navigator was found more difficult in this
setting than in single or specific disease settings. No
information was found on how the required ‘types’
of support could be delivered electronically. It is
expected that this PhD will be able to address this
and add to the field by delivering information on
how this patient group navigates the system, what
Care Navigation in Older People with Multimorbidity - Feasibility and Acceptability of using ICT
21
the obstacles are and how they would like to be
supported.
Secondly, this PhD brought together existing
ideas in health and social care (i.e., patient-centred
care and patient empowerment) and connected these
with the field of HCI (i.e., experience-centred
design). These models have not been linked with
each other before and led to the development of a
new framework: Patient-Centred Design. As HCI
with a focus on health and social care is expanding,
this new framework could provide a starting base.
Thirdly, the PhD applies popular techniques in a
new setting. For instance, the use of SNA to display
PCNs has not been used previously. However, by
using SNA to visualise the PCNs of these patients,
the field of health and social care is presented with
concrete PCN maps (i.e., graphs). These
visualisations allow us to highlight the care
providers of particular importance or relevance, the
main formats for communication, etc.
Fourthly, the PhD is expected to contribute in
driving multidisciplinary work. We are having an
equal influence in our team of computer scientists
and researchers in health and social care. As such we
assure to bear in mind age-related physical and
mental changes whilst looking for ICT solutions that
support or ease these changes rather than aggravate
them.
Fifthly, the final phase of this PhD will integrate
the data collected throughout the process. The
integrated data will then be reported as usable
documents (i.e., data-driven personas of older people
with multimorbidity). Today no data-driven
personas of this particular patient group exist in the
HCI community. However, the design process has
been shown to benefit from data-driven personas.
This PhD delivers concrete and usable documents
for design teams who might not be able to conduct
thorough data collection from this unique set of end-
users (e.g., older people with multimorbidity are
often difficult to reach), who might not be familiar
with this group of end-users, etc. As such, our data-
driven personas can provide design teams an
‘introduction’ to this unique user group, complement
internal customer service data, etc.
6 STAGE OF THE RESEARCH
This study started in 2013 and is currently in the
third year of research. The scoping review (first
phase) indicated that care navigation among older
people with multimorbidity is difficult, frustrating
and burdensome. The second phase (questionnaires)
is close to completion, with data currently showing
involvement of several care providers at different
sites. Although studies in the scoping review
revealed the types of information these patients
need, they did not address how this information
should be delivered. This gap will be addressed in
the interviews (third phase) in the PhD. Semi-
structured interviews will allow us to establish how
ICT can support this. Over the coming months the
data from the second and third phase will be
integrated into personas. This integration process
will be crucial to provide usable data-driven
personas. A framework has been set up to guide this
integration process.
7 DOCTORAL CONSORTIUM
Because of the stage of my PhD (i.e., just at the edge
of getting into the HCI phases) I see this doctoral
consortium as an exquisite opportunity to discuss
current findings and next steps with peers. Since my
PhD is situated at the cross point of health science
and social computing, I often have to ‘choose’ for
either health related conferences or conferences in
the field of HCI. The overall theme and scope of this
conference however, allow me to really bring
together, integrate and strengthen both strings of my
PhD. The conference will further give me the
opportunity to broaden my network and form
connections with experts in the field.
The doctoral consortium in particular, will give
me the chance to connect with PhD students across a
variety of disciplines and yet in the same main
stream of research, in a way that is often difficult in
day to day academic life. It provides me with a
platform where I can both discuss my research and
at the same time learn from my peers and their
research journey. It has been my experience that
bringing together PhD students with a shared interest
leads to wonderful opportunities (e.g., sharing ideas
on specific parts of research, collaboration).
Previous doctoral meetings have left me stimulated,
refreshed and with invaluable new connections.
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APPENDIX
Data Extraction Tool for Literature
Title Full title of the article
Type of literature
Type of literature e.g. research, conference abstract,
project description
Year
Publication year
Authors
Last name and letter of first name from authors
Study location
Continent/country where study took place
Aim of the study
Aims or goals of the study as given in the paper
Design/Methodology
Used method of study (e.g. qualitative research) and
design if appropriate
Sample Characteristics
Relevant sample characteristics of the study
Important results and findings
Summary of findings of the study
Relevance
Notes on relevance of the study in function of the
scoping review topic
Final Questionnaire
Free to obtain from the corresponding author (jvos@lincoln.ac.uk), not included as appendix due to its size.
Topic Guide for Interviews
Free to obtain the latest version of the topic guide from the corresponding author (jvos@lincoln.ac.uk), not
included as appendix due to its size.
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