IST-Africa 2020 Conference Proceedings

Miriam Cunningham and Paul Cunningham (Eds)

IST-Africa Institute and IIMC, 2020
ISBN: 978-1-905824-64-9

Challenges Affecting the Effective

Communication of PHI to Non-Medical
Users: A Contextual Inquiry.
Laura Chemtai CHEPTEGEI, Moses THIGA, Elizabeth OKUMU
Kabarak University, P.O Box Private Bag, Nakuru, 20157, Kenya
Email: [email protected], [email protected], [email protected]
Abstract: Non-medical users, those without any medical training background, have
difficulties in accessing, reading, locating, understanding and interpreting their
personal health information (PHI). Additionally, the medical user, those with a
medical training background, use medical terminologies and language which makes
it even more difficult for the non-medical users to understand their PHI. The aim of
this study was to investigate the challenges experienced in communicating PHI
effectively to non-medical users. A contextual inquiry was carried out and the results
showed that limited access to PHI, lack of understanding the content in the PHI
reports, lack of proper communication, lack of uniformity in the implementation of
the EMR system, are some of the challenges preventing effective communication of
PHI to non-medical users.
Keywords: Personal Health Information. Human Computer Interaction. Non-
medical Users. Information Presentation Design. Patients.

1. Introduction
Personal Health Information (PHI) is any information that relates to a person’s health and
well-being e.g. medical histories [1]. This information can be captured manually (paper-
based medical records), or electronically by use of information and communication
technologies (ICT), e.g. Electronic Medical Records (EMR). EMR are systems
implemented in hospitals to store, manage, track and retrieve PHI by healthcare workers in
a private, secure, and confidential environment [2]. The type of PHI obtained in EMR
systems comprises of textual data, images, audio, video, clinical notes among others [3].
This can be, abstractly described as large, factual, personal, sensitive, private, complex type
of data, structured data, unstructured data and one whose language has a lot of medical
terminologies [2, 4, 21]. PHI is equally important and beneficial for non-medical users such
as patients and family members. MyHealthEData initiative, the Health bill of Kenya, and
the Kenya national patients’ rights charter advocates for patients’ rights to their medical
information [8, 9, 10]. For instance, patients with copies of their PHI can be able to
communicate their health status with health care professionals e.g., when seeking a second
opinion, or participating in shared decision-making or in self-management action plans
[11]. Despite these benefits, non-medical users may experience challenges with access to
PHI such as low literacy level, low health literacy, complexity in the content and
presentation of PHI etc. [13].
Human computer interaction (HCI) is a multi-disciplinary field concerned with
developing interactive technologies that are accessible, useful, usable and safe for the users
[3, 5]. These attributes are especially important for EMR systems considering its
application domain which is healthcare. It also advocates for system designers to know their
system users, the kind of tasks carried out on the system by the users, the type of

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technology used by the users while carrying out their tasks and the environment that they
are situated in -context of use [3, 5, 6]. The user interface (UI) of EMR systems, being the
point of interaction for the users with the system, should also demonstrate usability
attributes such as learnability, efficiency, memorability, low error rates, and satisfaction;
these will enable users to easily carry out their tasks effectively, efficiently and
satisfactorily [7]. HCI also guides the design of presentation of PHI on the UI of the EMR
systems [3 ,7].
The aim of this paper is therefore to identify challenges that may prevent effective
communication of PHI to the non-medical users in developing countries. The holistic
approach of the study focuses on designing of a framework that will guide the design of UI
of EMR systems in order to communicate PHI effectively to the non-medical users.

2. Objectives
The main objective of the study was to investigate the challenges experienced in
communicating PHI effectively to non-medical users. The specific objectives were:
1. To identify the type of PHI non-medical users are able to obtain.
2. To identify the mode of presentation of PHI to non-medical users.
3. To identify challenges in the presentation design of PHI to non-medical users.

3. Related Work
3.1 EMR Systems in Developing Countries
EMR systems have been successfully implemented in developed countries by the majority
of the hospitals, largely because of support from the government e.g through financial
compensations of the health technologies used and also because of the availability and
reliability of resources such as internet, electricity and infrastructure [21]. On the other
hand, developing countries e.g Kenya, have been successful because of donor-funded
programs that implement EMR systems based on OpenMRS for specific diseases such as
HIV and Tuberculosis e.g., AMPATH OpenMRS, CPAD, IQCare [21]. Also, some
hospitals (private) have made efforts to invest in a new EMR systems that have been locally
developed [21, 22]. In public hospitals, the government is still in the process of
implementing EMR systems based on OpenMRS or DHIS2, as well as developing new
systems by modifying the existing EMR systems to include administrative and clinical
requirements of a hospital [21]. These efforts are indeed towards improving the quality of
health care services in the country [22]. However, there have been challenges through the
process e.g poor internet connection, resource constraints, inadequate data collection
systems, lack of incentives to collect health information, limited interoperability with other
systems and inadequate trained personnel [21]. The users of these systems are mainly
healthcare professionals who use these systems in their practices [12]. These are users with
medical training background e.g doctors, clinicians, nurses etc. [12]. The system might also
have users without a medical training background e.g., patients and their close family
members (non-medical users), who are interested in their PHI stored in these systems and
they might access it through various ways e.g patient web-based portals, mHealth tools as a
medium of communication e.g through SMS technology, e-mail, phone calls, doctor-patient
interactions, print health education materials etc. [3, 12, 22, 13].
3.2 PHI for Non-Medical Users
A lot of efforts are being made towards enabling non-medical users to manage their own
health and well-being e.g MyHealthEData initiative, SDG, Patient-Centred-Care (PCC) etc.
[8, 11]. In Kenya, the Kenya National Patient Rights Charter and Health Bill Act 21 of
2017 mention the patients’ rights to their medical information [9, 22]. This is through

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accessing their PHI and being able to make decisions with respect to their information [8,
11, 10]. This has led to non-medical users having a better understanding of their medical
condition; being able to communicate and share medical information with relevant people
clearly; being able to take action towards self-management of their health; and also being
able to make decisions concerning their health status [14,11,10]. Access to PHI has also
helped to improve satisfaction, decrease anxiety, improve safety and quality of care for
patients [15]. These benefits of PHI to non-medical users are in line with Sustainable
Development Goal (SDG) 3, which is good health and well-being [16]. Despite these
benefits, there have been challenges in communicating PHI to non-medical users e.g., low
literacy levels, health literacy levels, context and complexity of PHI, and even ICT
knowledge and skills [13 23]. It is also important to know the information needs of non-
medical users with regards to PHI. These needs refer to the patients’ desire for more
information on a particular subject matter that is expressed either verbally or in an active
information-seeking e.g. google search [20]. Identifying patients’ current information needs
and information sources will assist with presenting PHI in a manner that satisfies needs of
patients [20].
3.3 HCI in PHI
HCI advocates for developing of software products while keeping the users’ needs and
requirements at the centre of the development process [18]. This is done by involving users
during the development process from the beginning to the end, as a result, the end product
will be a usable and functional product [17, 18]. This involvement will lead to the designers
understanding the users’ needs and addressing them in the design process [18]. With respect
to PHI, the designers will be able to know the relevant content that should be presented for
the non-medical users, how it should be presented, in what sequence, and what level of
detail of the information should be presented. Birnbaum et al, in their commentary
emphasizes on the importance of patient involvement during the design of digital health
tools for them to be well utilized [24]. As PHI contains large complex datasets, designers of
EMR systems are faced with a design challenge of presenting different types of data on the
user interface in a compact and simple manner [19, 3]. For instance, clinicians may find it
hard to interpret information because EMR displays might be confusing, cluttered or
inaccurate [19, 3]. An even bigger challenge for system designers is on how to present PHI
on mobile devices UI which have small screen sizes [3]. Therefore, HCI will help in the
navigation and organization of the content on the UI of different screen sizes so that it
exhibits attributes such as easy to use, easy to learn, efficient, error-free, and even enjoyable
[17, 18]. HCI also provides guidelines on how to design interfaces that address human
limitations e.g. design guidelines on memory, perception, attention etc. [3, 17, 18].

4. Methodology
The study is qualitative in nature, and the right authorization process was followed in order
to conduct the study. A contextual inquiry was conducted in order to achieve the objectives
of the study. During the contextual inquiry, semi-structured interviews, observation and
field notes were used to collect data. Participants’ consent was sought prior to taking part in
the study and also recording of the interview sessions.
4.1 Study Sites
There were two sites for the study: Nairobi and Nakuru. In Nairobi, IntelliSOFT Consulting
limited, a software developing company, was identified and selected to participate in the
study. This is because the company has more than eight years of experience in designing,
developing, implementing, supporting and maintaining digital health solutions for low to
medium income countries. In Nakuru, the provisional government hospital (PGH) level 5

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hospital was identified and selected because the hospital implements an EMR system in
carrying out its activities and keeping medical records for its patients.
4.2 Participants’ of the Study
The participants of the study from the study sites were majorly grouped as either medical
users, non-medical users or software developers. The medical users consisted of those
participants with a medical training background e.g., doctors, clinicians, nurses. The non-
medical users consisted of those participants without any medical training background e.g.,
patients, family members. These groups of participants were selected because they are the
users of the EMR systems; the medical users use the system every day in their service
delivery to the patients at the hospital, while non-medical users use the system in order to
obtain their medical records for their own consumption. The other group of participants
were software developers who have experience in developing EMR systems.
4.3 Interview Sessions
The interview sessions began with the participants signing the consent form, which detailed
information on voluntary participation of the participants, anonymity and confidentiality of
their identification and data. The interview sessions took place at the participants’
environment and it also included observation of their environment and tasks on the EMR
system. The interview sessions were guided by semi-structured interview questions
designed for each group of participants. A total of seven recorded and three non-recorded
interview sessions have been conducted.
4.4 Observation
There were three interview sessions that mainly used the observation method and writing of
notes. One such session was in the clinical officer’s room during which the patients were
being attended to. Another session was at the pharmacy department where the participant
continued serving the patients while responding to the researcher’s questions. The other
session was at the medical records department where the interview session carried out was
for the purpose of complementing and confirming responses of the interview sessions
already carried out.

5. Findings and Interpretation

5.1 Demographics of the participants
Out of the ten participants interviewed; two were software developers, four non-medical
users, and four medical users. The non-medical users comprised of two out-patient cashiers,
one billing clerk, and the manager of medical records department, who is also the ICT
manager. The medical users comprised of two clinical officers (one paediatrician clinical
officer, and one diabetic clinical officer), one pharmacist and one medical records officer.
And the two software developer participants were developers of EMR systems. The number
of participants in the study is small. However, since this study is part of another related on-
going study, the number of participants in the study will increase. Additionally, there were
no patient participants interviewed in this study, since the findings revealed that patients do
not directly interact with the EMR system, rather they are secondary users of the system.
One participant confirms this finding during an interview session:
“Our patients do not have access to the system. The cashiers, billing clerks, nurses, and doctors
are the people who access the system.”
These findings are limitations of the study, since initially the study’s assumption was
that the non-medical users were patients and their family members, and that they were able
to access their PHI in the system. In reality, the study revealed that the non-medical users

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were actually administrative personnel e.g cashiers, billing clerks, without any medical
training background, and they were also primary users of the system other than the medical
users. Additionally, study findings showed that EMR systems developed, mainly catered for
the healthcare workers and not the non-medical users (patients):
“Our users are mostly clinicians and hospital administrators.” said one software developer
participant.
5.2 EMR Systems Implemented
There are different types of EMR systems implemented e.g. Q_Afya, DHIS2, KHIS,
CANREC and NHIF system. The Q_Afya is mainly used to capture patients’ PHI, cash
payments and billing services. It is used by some doctors, cashiers, billing clerks, pharmacy
and the medical records department. The NHIF system is used to verify NHIF patients and
also waiver or pay for the services provided to the NHIF patients. The DHIS2 and KHIS are
mainly used to capture and store data for reporting and research purposes, while the
CANREC system is used to capture and store records of cancer patients.
5.3 Type of PHI the non-medical users obtain
As it has already been established that non-medical users (patients) have rights to their PHI
[8, 9, 10]; one study objective was to identify the type of PHI the non-medical users are
able to obtain for the EMR systems at the hospital. The findings showed that patients obtain
printed outputs from the EMR system e.g cash receipts, discharge summary, patient history.
One participant during an interview session, commented that:
“The EMR system generates receipts for the patients which contains the services provided e.g.
doctor’s consultation, x-ray etc.”
On the same note, another participant also added that:
“The system generates cash receipts for the patients who are mainly out-patients. The system
can also generate billing statements for the in-patient, sick-off statements and even medical history.
The cash receipts are given after the patients pay for the services provided. We also request patients
to come with these receipts during their next visit at the hospital.”
Out of these outputs, there are those that are generated upon request e.g. sick-off
statements and medical history reports. The sick-off statements are used to request for days
off work and it details summarized information concerning the patient’s visit at the hospital,
the ailment, the attending doctor, the reason and the number off-days given. The medical
history reports are used by patients for cases such as filling in insurance claims, reporting of
a case at the police station, and are also used during court proceedings. The billing
statements are mainly for the in-patients, and they contain information detailing the cost of
items used by the patients during their stay at the hospital e.g. laundry, catering and the cost
of the treatment amongst others.
The study also revealed that the hospital implemented both the manual system and the
EMR system, with the former being the most accurate method of record keeping of
patients’ PHI.
One participant confirms this finding during an interview session:
“All patients’ information is physically stored in files, though not all is stored in the system.”
The reason for this is that there are some medical users who do not use the system during
service delivery to the patients. Three participants, in different interview sessions,
confirmed this finding by saying that:
“Doctors from the specialized clinics, who are mainly consultants do not use the system when
seeing patients.”
This finding also showed that the EMR system is mainly used for out-patient services while
the manual system is used for the in-patients. One participant confirmed this by saying that
– “we do not have the EMR system in the wards”. Another participant said that – “if the patient
has been admitted and is a new patient, we open a new physical file”. These findings suggest that

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the EMR system is not uniformly used at the hospital, and that not all the functionalities of
the system are implemented.
5.4 Mode of Presentation of PHI to Non-medical users
There are various modes of presentation of PHI to the non-medical users e.g in written
form, printed copies of outputs generated from the EMR system, verbally through
interactions with the medical users [13]. Other than the printed copies of PHI outputs they
are able to obtain; the findings also show that these outputs are sometimes supplemented
with explanations and demonstrations of the contents in the outputs. One medical user
participant said that:
“Sometimes we have to demonstrate to them, explain and explain it again. And when or if they
do not understand we repeat.”
This was in response to a question on whether the patients understand the contents in
the PHI reports given to them. These findings suggest that though the non-medical users
access part of their PHI, there is the aspect of whether they understand the contents in those
reports. This was also observed at the pharmacy department, when a pharmacist gave a
patient medication and explained that one of it was for an injection, and the patient seemed
surprised at the mention of an injection. Therefore, in order to ensure that the non-medical
users have understood, verbal communication of the same information is also used.
Another important finding of the study is that the language of communication used at all
the operation points in the hospital between the medical users and the non-medical users
(patients) is mainly Kiswahili, and sometimes the English and vernacular languages where
applicable. One medical user participant mentioned that:
“Most of the time we speak in Kiswahili and sometimes even the vernacular language when
seeing patients.”
This was indeed confirmed by the findings of an observation at the doctor’s room where
the language of communication was Kiswahili. Likewise, findings from another observation
showed that the pharmacists served the non-medical users using the Kiswahili language to
explain the purpose of the medication, whether the medication was an injection or oral, and
also the frequency of the medication to be taken.
Another finding from observation showed instances where doctors failed to
communicate to the patients their PHI. For instance, an observation was made where a
medical user inquired from the patient whether a certain medical user explained a certain
test to the patient and the feedback was non-confirmatory. To confirm on the same finding,
observations were made at the pharmacy department where patients inquired for more
information concerning the prescribed medication e.g. what the medication treats. This
finding shows that there is lack of proper communication of PHI to the non-medical users,
and also interest in understanding their PHI.
5.5 Challenges in the presentation design of PHI
One of the benefits of patients accessing their PHI is that they will have a better
understanding of their health status and also be able to make decisions concerning their
health and well-being [14, 11, 10]. Sample PHI reports of the EMR system were obtained
for the purpose of this study. Anonymity and confidentiality of the non-medical user’s
personal information was assured. User interface design guidelines such as familiarity,
simplicity, visibility and even consistency, when adhered to enable the user to easily use the
system [7]. The generated output reports of the EMR system at the hospital can also be
viewed on the user interface. Therefore, user interface design guidelines and the usability
attributes are also applicable on the presentation design of the PHI on the UI of the system
and on the printed outputs from the system. For this study, an evaluation of the sampled
output reports of the PHI against the user interface design guidelines was carried out. Initial
observation findings show consistency in all the reports as it contains general information
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regarding the hospital e.g. contact information, use of the county government’s logo.
Another finding showed that there is use of both small and capital letters to distinguish
between the content and the title heads of the content. This addresses the visibility and
consistency design guidelines. This means that the non-medical users can be able to
somehow locate the information. Another finding is that the PHI in the reports is presented
in the English language. However, there was evidence of difficult medical terminologies in
the reports. This finding suggests that the non-medical users would not be able to
understand the information in the report because of the complexity in the language and
whether they are able to read and understand the English language. Another observation
made showed no evidence of use of different colours and graphics in the presentation of the
PHI. This finding shows that the non-medical users may find difficulty in distinguishing
between very important information and the less important information. Another important
finding from the observation of the reports show that the cash and billing statements and
also the sick-off statement contain very basic information, hence inadequate. For instance,
there is no evidence of doctor’s diagnosis in the cash and billing statements.

6. Benefits and Future Work

This study has led to the understanding of the current use and implementation of the EMR
systems in Kenya e.g., who are the users of the system, what activities are carried out on the
system, and what kind of PHI are stored in the system. It has also led to the understanding
of the kind of output the non-medical users are able to obtain from the EMR system e.g.
cash receipts. As this is an on-going study, the findings of this study is important as it will
inform the direction of the subsequent study and also, ultimately inform the design of the
UI framework. This will benefit the software developers mostly as it will provide guidance
on the design of UI for the presentation of PHI for the non-medical users. Therefore, the
study ultimately benefits the non-medical users by empowering them with PHI that they
can easily understand and interpret. The study also benefits the health practitioners, as it
will support them in communicating PHI to the non-medical users hence improving
relationship, communication and understanding between the medical users and the non-
medical users. As the study progresses, there is still need to establish the information needs
of the non-medical users (patients) based in developing countries with respect to the
presentation of their PHI and their understanding of the same information. Additionally,
there is still more work to be done in improving the presentation of PHI for the non-medical
users (patients), through design and evaluation methods from the HCI perspective.

7. Conclusions
Non-medical users should be empowered to manage their own health and well-being. In
order to do so, access to the PHI is important. This study aimed at investigating challenges
experienced when communicating PHI to the non-medical user. The results showed that
limited access to PHI, lack of understanding the content in the PHI reports, lack of proper
communication of PHI, lack of uniformity in the implementation of the EMR system, and
inadequate PHI content in the outputs, are some of the challenges preventing effective
communication of PHI to non-medical users. Therefore, learning opportunities exists for
developing countries e.g Kenya, to learn from developed countries, on ways to efficiently
implement and use EMR systems in hospitals, as well as finding ways for non-medical
users to access and understand their PHI from the EMR systems.

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