Health Information Systems for Clients with Mild Intellectual and

Developmental Disability: A Framework

Muneef Alshammari

, Owen Doody

and Ita Richardson

1,2,4

Lero-The Irish Software Research Centre, University of Limerick, Ireland

Department of Computer Science and Information Systems, University of Limerick, Limerick, Ireland

Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland

Aging Research Centre, HRI-Health Research Institute, University of Limerick, Limerick, Ireland

Keywords: Intellectual and Developmental Disability, Client Engagement, Person-centred Care, Gamification in

Healthcare, Information-Motivation-Behavioral Skills Model (IMB), Person-Centred Health Information

Framework (PCHI).

Abstract: Persons with intellectual and developmental disability (IDD) remain among the most vulnerable members of

society and frequently face numerous barriers accessing healthcare services. Following our recent literature

review identifying needs for persons with IDD, we propose that frameworks can be useful to identify the key

components of person-centred health information. These will ultimately support the building of relevant

Health Information Systems. This paper presents the initial development and content of the Person-Centred

Health Information framework (PCHI) developed to support persons with mild IDD. PCHI is based on the

Information-Motivation-Behavioral skills (IMB) model and its use in the design and development of Health

Information Systems has the potential to improve health access and outcomes for persons with mild IDD.

1 INTRODUCTION

Due to the recent unprecedented advances in software

and technology, Health Information Systems (HIS)

worldwide are undergoing innovative

transformations. HIS refers to the interaction between

people, process and technology to support operations

and management in delivering essential information

to improve the quality of healthcare service

(Almunawar and Anshari, 2012). HIS should not be a

separate and independent component of the health

system and should be designed according to the

service delivery system with patients/clients in mind.

HIS have the potential to deliver collaborative

person-centred care delivery across the continuum of

care.

The concept of person-centred care has been

increasingly advocated in healthcare. Additionally,

person-centred care is important for healthcare

services, eliciting insights from patients/clients which

foster improved working partnerships, thus providing

healthcare services that better meet consumer needs

(Delaney, 2018). However, person-centred care can

give a subjective lived-experience perspective of

IDD.

Persons with intellectual and developmental

disability (IDD) represent one of the major disability

groups in the developed world. IDD is defined and

characterized by significant limitations both in

intellectual functioning (reasoning, learning,

problem-solving) and in adaptive behaviours which

relate to everyday social and practical skills.

Internationally, IDD currently affects around 1% of

the population in high income countries and 2% in

low and middle income countries (Maulik et al,

2011). For persons with mild IDD, difficulties in

processing complex domain-specific statements,

understanding healthcare information content and

complying with treatment plans are common.

Supporting persons involves supporting the person to

fulfil basic needs, such as managing self-care and

self-advocacy. Thus, the opportunity for persons to

make choices are important to their quality of life.

When developing HIS to support person-centred

healthcare for use by persons with mild IDD,

researchers and developers must account for their

specific requirements.

New technologies are continuously being

adopted in healthcare services. Additionally,

developments in HIS have facilitated more effective

Alshammari, M., Doody, O. and Richardson, I.

Health Information Systems for Clients with Mild Intellectual and Developmental Disability: A Framework.

DOI: 10.5220/0008966801250132

In Proceedings of the 13th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2020) - Volume 5: HEALTHINF, pages 125-132

ISBN: 978-989-758-398-8; ISSN: 2184-4305

125

approaches to healthcare activities and increased ease

of accessibility for vulnerable individuals (Bechtel

and Ness, 2010). Modern HIS improves service

quality in the healthcare service sector in general and

in clinical treatment in particular, enhancing client

safety (Rahimi, 2018). As a vulnerable grouping,

further research is required regarding the use of

technology to support persons with mild IDD,

examining topics such as access to and effectiveness

of healthcare services. This paper aims to address this

by outlining a framework for person-centred health

information for persons with mild IDD. The

proposed framework extends the existing

Information-Motivation-Behavioral (IMB) skills

model to include engagement and communication,

with a view to supporting and improving clients’ self-

care management and quality of life. Utilising this

framework will inform and support the development

and design of future HIS systems for persons with

mild IDD. Through drawing attention to HIS design

and accessibility, adherence to existing HIS standards

for users with IDD can be promoted. Additionally,

researchers can be encouraged to develop new

interaction strategies to address the issues related to

HIS design and usability for persons with IDD.

1.1 Research Question

As increasing attention is drawn to health disparities

across the general population, data also demonstrates

that clients with IDD experience even greater health

inequalities (Kirschner et al., 2007). Beyond the

realm of healthcare services, the general population

routinely utilizes technology to obtain information

and perform everyday tasks at a click of a button.

However, most health care systems have been

conspicuously slow to develop information system

tools of comparable functionality for persons with

mild IDD (Krist and Woolf, 2011). Therefore, this

paper considers the central research question:

Which conceptual framework for person-centred

health information can support the development

of HIS for clients with mild IDD?

The question is addressed by:

• Reviewing academic literature to identify

frameworks which have been used successfully in

various support provision areas;

• Developing and presenting a framework which

can be used to support HIS development for

persons with mild IDD.

2 LITERATURE REVIEW

Our recent literature review (Alshammari, et al.,

2018), identified six main barriers to the use and

access of health information which are experienced

by persons with mild IDD: (a) communication skill,

(b) client engagement and satisfaction, (c)

training/education for persons with IDD, (d) attitude

and knowledge of healthcare professionals, (e)

persons with IDD being excluded from health

promotion and research, and (f) quality of accessing

healthcare services. In this paper we are particularly

interested in working towards the elimination of

barriers to communication and engagement, and, in

providing more details regarding the experience of

persons with IDD when accessing health

information. Furthermore, we describe relevant

literature examining the accessibility of HIS for

persons with mild IDD.

2.1 Barriers to Communication

It is estimated that 50% to 90% of persons with IDD

experience a significant range of communicative

challenges (Baker et al., 2010). It therefore follows

that communication plays a key role in the

formulation and adoption of any person-centred

health information framework for persons with mild

IDD. In our previous paper, we identified that

persons with mild IDD struggle to understand

information from their healthcare professionals or

they themselves are not able to effectively

communicate their thoughts or needs regarding their

health condition (Alshammari et al., 2018). In

addition, other studies (Chou, 2012, Mustika et al.,

2014) identify that children with IDD can develop the

ability to communicate and learn using such

technology. Persons with mild IDD and their carers

expect healthcare professionals to communicate well,

both in terms of how they conduct information

provision and their service relationships.

Communication is an important dimension which can

have a positive effect not only on a person's self-

management of their healthcare, but also on

additional factors including socio-demographic

characteristics and a person’s health literacy (Santana

and Feeny, 2014). The increasing complexity of care

pathways arising from the growing numbers of

persons with mild IDD who experience chronic

illness further increases the communication demands

facing healthcare professionals. Unfortunately, such

complexities also raise the likelihood of problems and

errors, while resolving these problems rests more and

more on sophisticated forms of communication

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(Iedema and Manidis, 2013). Well-developed HIS

can provide solutions to communication barriers, thus

enhancing the patient-centredness aspect of

healthcare systems.

2.2 Barriers of Engagement

Due to communication barriers, it is difficult for

persons with mild IDD to engage with the health

system. For example, during clinical consultations,

the communication is often directly between the

health professional and the carer - consequently, the

person with mild IDD is left out of the conversation.

To address this enhanced engagement for persons

with mild IDD offers a promising pathway towards

both better quality and more efficient care. This, in

turn, should improve overall population health.

Persons with mild IDD need the encouragement and

support to be more confident and involved in their

personal healthcare decision-making process, as

those who are engaged as decision-makers in this way

have been shown to be healthier and achieve better

outcomes (Chinn, 2017). Thus, personal engagement

in healthcare management has the potential to

contribute to better health outcomes, and HIS have an

important role to play in supporting this engagement.

It is important that the barriers of engagement are

properly considered during HIS development and

solutions devised to address the key barriers for

persons with mild IDD.

2.3 IDD and HIS

Existing literature exploring HIS often focuses on

assistive technology and these studies touch on topics

related to the using mobile technology such as

increasing self-discovery and an increasing

confidence in technology use (Chmiliar and Anton,

2015, Burke, 2017).

However, there are few studies on HIS for persons

with IDD. The literature available on this topic

mainly relates to hospital passports which some

studies refer to as hand-held health records (HHHRs),

logbooks, health passports or health diaries.

Northway et al. (2017) presented a review of

hospital passport use in the UK for persons with IDD.

In their review, they found that some health passports

lack primary care information as well as a level of

communication which supports expression and

understanding. However, this does not necessarily

speak to the level of HIS technology because they

were not considering a technological intervention. In

addition, Nguyen et al. (2014) highlighted the use and

benefit of hospital passports for persons with IDD,

reporting that hospital passports could increase

health-related knowledge and awareness of personal

health issues for long-term healthcare activity.

Conversely while their review is not explicitly for

HIS technology content, they offer health passports

as a solution for the improvement of hospital records

and as a means to support persons with IDD in the

long-term. Thereby, this would enhance knowledge

and provide an awareness of personal health issues.

3 RESEARCH METHOD

Following a literature review (Alshammari et al.,

2018) to identify and discuss the barriers to access

health information , a review of existing models and

frameworks used and acknowledged to improve

health outcomes for persons with mild IDD was

undertaken.

This iterative process involved a series of

systematic steps (see Figure 1) and led to the

development of person-centred health information

framework. The process included a mapping of

existing conceptual frameworks and models against

person-centred health care requirements. Identifying

similarities and matching elements of each existing

framework was an important step and confirmed the

strong relationship between health information and

person-centred care. The Information-Motivation-

Behavioral (IMB) skills model was identified as a

starting point for building a conceptual framework for

person-centred health information for persons with

mild IDD. In actual fact, the IMB model emphasizes

that people who are well-informed and motivated are

likely to engage in activities that enhance knowledge

and skills needed to perform focused behaviour,

which allows them to obtain better health outcomes

(Athilingam et al., 2017). In doing this, we developed

the concepts of barriers to engagement and barriers to

communication, and conceptualized them within the

IMB skills model. The framework that we present

here, the Person-Centred Health Information (PCHI)

framework for persons with mild IDD, is its first

iteration.

Health Information Systems for Clients with Mild Intellectual and Developmental Disability: A Framework

127

Figure 1: Processes used to develop Person-Centred Health Information framework (PCHI).

3.1 Information-Motivation-Behavioural

Skills Model

The IMB framework demonstrates that, while

information is a prerequisite for changing behaviour,

information in and of itself is insufficient to achieve

this change (Osborn et al., 2010). As a general social

psychological conceptualization for understanding

and promoting health-related behaviour, it purports

that persons who are well-informed and motivated are

likely to engage in activities which enhance the

knowledge and skills needed to perform focused

behaviour, and, in turn, are enabled to enjoy better

health benefits (Fisher et al., 2003). The IMB model

has three constructs: (1) information, (2) motivation,

and (3) behavioural skills (Sabaté, 2003) and has been

empirically validated across a number of diverse

populations and health promotion behaviours.

While IMB is recognized as a credible model, a

literature review conducted by Alshammari et al.

(2018) identified a significant gap in knowledge for

developing HIS. Thereby, considering the barrier to

communication and engagement that must be

considered when developing HIS for persons with

mild IDD, we modified the IMB skills model to

address these barriers. Within HIS, the accuracy of

information is not sufficient as an output for persons

with mild IDD to support the management of their

personal healthcare. Communication and

engagement are equally important and must be

included in any framework supporting HIS

development. Our proposed Person-Centred Health

Information Framework (PCHI) offers an extended

version of the IMB model.

3.2 Person-Centred Health

Information Framework (PCHI)

Version 1

Figure 2 presents the PCHI framework for persons

with mild IDD and variables not previously included

in IMB are indicated by dotted lines. The inclusion

of both engagement (Athilingam et al., 2017) and

communication (de Jong et al., 2014) are essential as

they have a direct bearing on health outcome.

Moreover, the model proposes that communication

and engagement factors may indirectly influence

health outcome by means of behaviour change. In

addition, the communication element may indirectly

influence the health outcome via motivation.

Engagement may also exert an indirect influence on

health outcome through an understanding of health

information and a stronger involvement with the

healthcare professionals. This first iteration of PCHI

has six components as described in the following

sections.

3.2.1

Health Information

The simplest function of personal health records is to

store information which may be entered by the person

and can include hyperlinks to useful resources. Some

personal health records personalise information for

the individual and would incorporate motivational

messages to help the person take action to confront

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challenges, such as weight loss. When presenting

health information to persons with mild IDD, we need

to consider how they can process and use information.

Therefore, the use of simple vocabulary or pictorial

language which can be understood by persons with

mild IDD could be implemented. This type of

information is likely to be most effective both at the

outset of care and in subsequent maintenance, and

needs to include accurate information about available

treatment(s) (Rivet, 2011). Additional information

can also include health promotion advice and facts

about preventive behaviour.

3.2.2

Motivation

In the past decade, there is a wide range of

recreational software applications intended to

promote various aspects of health-care, from simply

helping people adhere to an activity schedule, get

fitter, or to deal with the day-to-day care of chronic

illnesses. Furthermore, the application of

gamification is popular in physical health domains

such as physical fitness, diet, and managing chronic

illnesses (Werbach and Hunter, 2012). As motivation

is at the heart of sustained behaviour change, games

are deemed to be among the most powerful

motivational tools (Deterding, 2015), and can be

applied to many fields (Zichermann and

Cunningham, 2011). The utilization of gamification

in health-related contexts is growing. Many solutions

are intended to promote wellness and consequently

reduce the potential negative outcomes associated

with unhealthier or risky behaviours (Institute of

Medicine, 2001). For Deterding et al., (2011),

“gamification is about making use of the underlying

principles of gaming and applying them to any non-

game activity”. Moreover, according to Zichermann

and Cunningham (2011) gamification is “the process

of game-thinking and game mechanics to engage

users and solve problems, these definitions that

unites concepts such: as serious games, advergaming,

and games-for-change into a cohesive worldview

that’s informed by the latest research into behavioral

psychology and the success of social games.”

Games are broadly acknowledged as having the

capability to expand persons' motivation. As

indicated by the Federation of American Scientists,

there are numerous elements which make a game

motivating, a fuller understanding of which can aid

the application of gamification in training (Sitra et al.,

2017). Persons with IDD have demonstrated a strong

interest in video games (Mazurek et al., 2015) and

those who are undertaking research into autism have

also been increasingly interested in examining the

effects of video game use. Consequently, many

researchers have focused on developing applications

of game technology for improving social and

behavioural outcomes in persons with IDD (Durkin,

2010, Ern, 2014).

3.2.3

Engagement

Having persons with mild IDD become active

participants in their healthcare is recognized as a

crucial component of high-quality healthcare

services, particularly in the treatment of chronic

illnesses (Hale et al., 2011). Engagement, as shown

in the PCHI, will encourage developers to consider

the use of HIS in terms of their personal health record

to enable data and information sharing between

persons with mild IDD and their healthcare

professionals. Thus, this also has the capacity to

motivate persons with mild IDD. Motivation such as

gamification can also be used to support engagement,

as games are frameworks which are purpose-built for

both enjoyment and engagement (Johnson et al.,

2016).

3.2.4

Communication

This element of the framework focuses on effective

communication between healthcare professionals

and persons with mild IDD. Major goals within the

category of communication from a HIS perspective

are to facilitate easier access for persons with mild

IDD to their health professionals, thereby reducing

reliance on telephone or potentially unsecured email

systems, encouraging persons with IDD to

communicate using their own words, and

empowering them to interact directly with their

personal medical record. We propose that the

communication construct within PCHI could

enhance the communication channel between

persons with IDD and healthcare professionals

through meaningful involvement of all parties in the

care process. The challenge for persons with IDD is

in reframing healthcare professionals as partners who

offer advice and identifying approaches which enable

them to take responsibility for their health and

wellbeing, such as engaging in self-managing

behaviours (Santana and Feeny, 2014).

Health Information Systems for Clients with Mild Intellectual and Developmental Disability: A Framework

129

Figure 2: The Person-Centred Health Information Framework (PCHI) version 1.

3.2.5 Behaviour Change

As shown in the PCHI framework, both increased

motivation and the provision of health information

could encourage persons with IDD to change

behaviour. This would support the implementation of

a PCHI framework-based intervention because they

are person-centered and goal-oriented. Several

conceptual models of health behaviour change

describe the factors influencing behavioural

performance across disease contexts, with the

ultimate goal of informing health promotion

interventions (Elder et al., 1999).

Fundamentally, our framework asserts that

persons with mild IDD who are well informed and

motivated are likely to engage in activities that

enhance knowledge and the skills needed to perform

focused and relevant behaviour. Allowing persons

with IDD to reap greater health benefits.

3.2.6

Health Outcome

At a general level, our framework emphasizes that

undertaking positive health behaviour is a function of

the extent to which individuals are well-informed,

motivated, engaged and enabled to communicate.

This will then enable the instigation of behavioural

change, either personally or in conjunction with their

carer. To ensure that persons with mild IDD are not

disenfranchised by the growing number of HIS, their

requirements need to be considered in the

development and design of such systems. PCHI

provides a framework to support and inform such HIS

developments. However, it must be recognised that

persons with IDD may need further support from their

carers and friends, which technology cannot provide,

but may be able to influence.

DISCUSSION

In the general population, it is reported that people

who directly communicate health concerns to their

healthcare professionals have a greater degree of

influence on the health outcome. In the interests of

the individual and of equality and inclusion, this

should also be the case for persons with mild IDD. It

is an important behaviour in the healthcare context

because information without accessibility cannot

have any impact on their health unless it is consumed

by persons with IDD. This paper has identified a set

of framework components that should be considered

during HIS developments. This framework can be

used to guide HIS design with the intention of

improving the health outcome for persons with IDD.

HEALTHINF 2020 - 13th International Conference on Health Informatics

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To this end, we have scoped the parameters of a

design framework, PCHI, incorporating elements

derived from the literature and a previously existing

model, the IMB skills model. The value of this

framework is that it enables us to proactively identify

and understand person-centred HIS design for

persons with mild IDD. Studies in the field of IDD

highlight the benefits of person-centred health

information from both the individual and

organizational perspectives. The PCHI framework

proposes that communication and engagement are

additional intrinsic elements not previously included

in such frameworks. As indicated through the IMB

skills model, this need has not been identified for the

general population. Our paper focuses on a specific

population - persons with mild IDD, and has

highlighted communication and engagement as a

specific need for this population group. Indeed, it is

possible that other specific populations such as those

with dementia or older persons have similar

requirements, but this is not within the scope of this

paper. Design and development of HIS which

consider and include the elements from PCHI can

contribute to better health outcomes for persons with

mild IDD. Our future work will involve the

development of a prototype HIS through the

involvement of persons with mild IDD. Furthermore,

we will test it with a diverse population within a range

of settings.

5 CONCLUSION

There is currently a crucial unmet need for PCHI

targeted person-centered interventions that are easy to

use by persons with IDD who experience cognitive

difficulties and lack social support. The World

Health Organization Report on Disability

recommended the development of a person-centred

framework for assessing people rendered vulnerable

through issues of disability (World Health

Organization, 2015). Such a framework can be useful

for identifying specific health needs and challenges,

assisting the decision-making for persons with mild

IDD and their caregivers. This work commences that

development. Considerable work remains to be done

in terms of HIS development, implementation and

evaluation. Healthcare professionals and family

caregivers are critical partners in the plan for persons

with mild IDD. As reliance on technology grows, we

need to consider other elements which could be

included in PCHI. There is more to be learned about

the effect of person-centred health information on a

person’s health outcomes, and we may need to

consider, for example, safety and quality of care.

Today, more than ever, HIS can play a pivotal role in

enabling persons with mild IDD to become more

independent and capable as they engage in their own

healthcare process.

ACKNOWLEDGMENTS

This work was funded by college of Public Health and

Health informatics, University of Hail. It has been

partially supported by the Science Foundation Ireland

grant 13/RC/2094, co-funded under the European

Regional Development Fund through the Southern &

Eastern Regional Operational Programme to Lero -

the Irish Software Research Centre (www.lero.ie).

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