Care Navigation in Older People with Multimorbidity

Feasibility and Acceptability of using ICT

Jolien Vos

1,*

, Conor Linehan

, Kathrin Gerling

, Karen Windle

and Niroshan Siriwardena

School of Health and Social Care, University of Lincoln, Brayford Pool, Lincoln, U.K.

School of Applied Psychology, University College Cork, Cork, Ireland

School of Computer Science, University of Lincoln, Brayford Pool, Lincoln, U. K.

1 RESEARCH PROBLEM

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-

* 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

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

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

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

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

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

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

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.

DCICT4AWE 2016 - Doctoral Consortium on Information and Communication Technologies for Ageing Well and e-Health