p5 - Remote Monitoring Systems For Chronic Patients
p5 - Remote Monitoring Systems For Chronic Patients
p5 - Remote Monitoring Systems For Chronic Patients
Original Paper
Na Liu1; Jinman Kim2,3, PhD; Younhyun Jung2,4, PhD; Adani Arisy2; Mary Ann Nicdao4; Mary Mikaheal4; Tanya
Baldacchino3; Mohamed Khadra2,3; Kamal Sud4,5,6
1
School of Information Technologies, Sydney, Australia
2
Biomedical and Multimedia Information Technology (BMIT) Group, School of Information Technologies, Sydney, Australia
3
Nepean Telehealth Technology Centre, Nepean Hospital, Kingswood, Sydney, Australia
4
Home Haemodialysis Unit, Regional Dialysis Centre, Blacktown Hospital, Sydney, Australia
5
Department of Renal Medicine, Nepean Hospital, Kingswood, Sydney, Australia
6
Sydney Medical School (Nepean Clinical School), The University of Sydney, Sydney, Australia
Corresponding Author:
Jinman Kim, PhD
Biomedical and Multimedia Information Technology (BMIT) Group
School of Information Technologies
J12, School of IT
Sydney,
Australia
Phone: 61 2 9036 9804
Email: [email protected]
Abstract
Background: Patients undertaking long-term and chronic home hemodialysis (HHD) are subject to feelings of isolation and
anxiety due to the absence of physical contact with their health care professionals and lack of feedback in regards to their dialysis
treatments. Therefore, it is important for these patients to feel the “presence” of the health care professionals remotely while on
hemodialysis at home for better compliance with the dialysis regime and to feel connected with health care professionals.
Objective: This study presents an HHD system design for hemodialysis patients with features to enhance patient’s perceived
“copresence” with their health care professionals. Various mechanisms to enhance this perception were designed and implemented,
including digital logbooks, emotion sharing, and feedback tools. The mechanism in our HHD system aims to address the limitations
associated with existing self-monitoring tools for HHD patients.
Methods: A field trial involving 3 nurses and 74 patients was conducted to test the pilot implementation of the copresence
design in our HHD system. Mixed method research was conducted to evaluate the system, including surveys, interviews, and
analysis of system data.
Results: Patients created 2757 entries of dialysis cases during the period of study. Altogether there were 492 entries submitted
with “Very Happy” as the emotional status, 2167 entries with a “Happy” status, 56 entries with a “Neutral” status, 18 entries with
an “Unhappy” status, and 24 entries with a “Very unhappy” status. Patients felt assured to share their emotions with health care
professionals. Health care professionals were able to prioritize the review of the entries based on the emotional status and also
felt assured to see patients’ change in mood. There were 989 entries sent with short notes. Entries with negative emotions had a
higher percentage of supplementary notes entered compared to the entries with positive and neutral emotions. The qualitative
data further showed that the HHD system was able to improve patients’ feelings of being connected with their health care
professionals and thus enhance their self-care on HHD. The health care professionals felt better assured with patients’ status with
the use of the system and reported improved productivity and satisfaction with the copresence enhancement mechanism. The
survey on the system usability indicated a high level of satisfaction among patients and nurses.
Conclusions: The copresence enhancement design complements the conventional use of a digitized HHD logbook and will
further benefit the design of future telehealth systems.
KEYWORDS
remote-monitoring; home hemodialysis; co-presence enhancement; design
such as respiration rate, heart rate [23], blood pressure, and were able to perceive their interaction with a partner and that
blood glucose level [24], some of which are able to be captured their interaction partner actively perceived them [28].
by wearable sensors [25] while others rely on patients’ self-input
Copresence was widely studied in the field of human-computer
[26]; (2) a dashboard for clinicians to view data through a Web
interactions, and its application has been used in the context of
interface or mobile interface enables authorized personnel to
virtual team collaboration [31] and online shopping experiences
monitor the patients’ condition and facilitate remote diagnosis;
[32]. Higher perceived copresence directly influences the
and (3) a messaging function to provide reminders or alerts to
satisfaction of the communication medium [28]. However,
both patients and physicians. These systems are continuously
existing studies of remote patient monitoring have not yet
being enhanced, but challenges remain to improve their clinical
capitalized on the importance and capabilities of copresence.
impact. Data security and privacy are believed to be major
threats to IT-enabled patient monitoring systems, especially in
terms of patient identification and confidentiality of medical
Methods
information [27]. Another concern is the battery life or energy A field trial involving 3 nurses and 74 participants was
consumption of the design, as continuous data collection and conducted to evaluate the copresence-enhanced HHD system,
processing can impose on a phone’s battery runtime [27]. over a 6-month period.
Prior research suggests that addressing social isolation and The Home Hemodialysis System Architecture
emotional needs of users is a challenge to the emerging
telemonitoring and smart care technologies [12]. The feeling The home-monitoring system consisted of three main
of isolation is also a serious problem in patients on HHD [5] as components. The first component is the HHD app installed in
there is a lack of face-to-face communications between patients the patient’s mobile device. The second component is the cloud
and health care professionals. As the HHD procedures require server built on Windows Azure services with SQL storage as
patients to perform the complex dialysis treatments the database. The third component is the Web app also hosted
autonomously, the feeling of isolation from health care on the Azure server. Azure provides industry-leading protection
professionals may cause anxiety and lower their mood and and privacy of the data. Patients use their own mobile device
self-confidence. When patients feel disconnected from their to record their hemodialysis-related data. These data are sent
health care professionals, their compliance to medical advice immediately whenever the mobile device has an Internet
drops and their confidence of self-care also comes down [5]. connection. After the Azure cloud service retrieves the data, it
Thus, in this study we have paid attention to the social nature is stored in its database. Patients’ health care professionals
of using technology and introduce the concept of copresence. (including their HHD nurses and renal specialists) can choose
We discuss how we designed a remote-monitoring system for to access the website at any time. The website provides the
patients on HHD to reduce patients’ feelings of isolation. patient’s up-to-date status with regards to their HHD treatment
parameters, along with trends in these parameters over time,
Copresence, referring to the sense of connection with another enabling the clinical team to make appropriate decisions on a
interactant [28], exists when people feel that they are actively patient’s dialysis prescription, blood pressure, and body weight
perceiving others and feel that others are also actively perceiving that are a surrogate of their body fluid status. Reports along
them [29]. Specifically, copresence refers to the perception by with trends in various parameters over time can be generated
a communicator that another person in a mediated or online and saved as printable documents. Figure 1 illustrates the
environment is real, immediate, or present [30]. Thus, described functionality, users, and the exchange of information
copresence is a reflection of psychological connection to and and emotion between the patients and the health care
with another person. It is required that interactants feel they professionals. The detailed functions of the HHD system and
the copresence enhancement features will be described below.
explain whether they felt better connected with the health care
Timeline of the Study and Data Collection professionals and whether they were more confident in doing
In order to evaluate the effectiveness of the system in general their dialysis at home. Content analysis techniques were used
and the copresence enhancement mechanisms, a field trail was for analyzing the qualitative data obtained. Content analysis is
conducted with users at the Home Hemodialysis Unit at the a research tool used to determine the presence of certain words
Regional Dialysis Unit, Blacktown Hospital in Sydney. The or phrases within texts, and from these, infer the meanings that
Home Hemodialysis Unit is part of the Western Renal Service underlie these passages of text [35]. Researchers use these
in Western Sydney that has a philosophy of promoting home techniques to make inferences about the messages within the
dialysis and is one of the largest home dialysis services in texts by analyzing the presence, meanings, and relationships of
Australia. certain words and concepts [35]. The purpose is to reveal the
A 2-week trial to test the app’s functionality on an Android insights related to the system usage rather than establishing
platform commenced initially with 10 patients and 2 health care casual relationships.
professionals (nurses). Improvements were made based on the Basic quality assurance surveys were also conducted with the
feedback received, and an iOS version was launched along with patients, where patients were required to answer a few questions
updated Android version. Patient recruitment was scaled up to in a 5-point Likert form to evaluate the systems along three
74 patients and also to 3 nurses. The timeline of the study is dimensions: ease of use, reliability and performance, and
summarized in Figure 6. usefulness. The questions were adopted from prior validated
Once the HHD system was implemented within the Unit, an instruments with minor modification to the context of dialysis
audit was conducted wherein qualitative data were collected patients. Sample survey questions and interview protocols are
through semistructured interviews to understand the efficacy included in Multimedia Appendix 1. The interview data were
of the copresence enhancement mechanism with nurses and analyzed together with basic quality assurance survey to look
patients. The interview was structured based on the system at patients’ and nurses’ feedback on general system usage,
evaluation: ease of use, reliability and performance, and copresence enhancement mechanisms, and effectiveness of the
usefulness. The patients were allowed to give general comments system. System data including the frequency of self-reporting
along these three dimensions. They were further probed to and the time being acknowledged are also analyzed.
Table 1. The number of entries patients made during the evaluation period.
Entries Very happy Happy Neutral Unhappy Very unhappy
Entries, total N 2757 492 2167 56 18 24
Percentage of different emotional status, % 100 17.8 78.6 2.03 0.65 0.87
Average entries per patient, n 37 6.6 29.3 0.76 0.24 0.32
Patients reported an average of 4.2 on ease of use of the system were submitted with short notes. We compared the notes entered
(SD 0.77). Patients also reported an average of 4.1 for reliability against the emotion status submitted (see Table 2). Among 492
and performance of the system (SD 0.87). The average perceived entries with the “Very Happy” status, 256 entries were
usefulness of the system was 4.1 (SD 1.4). They also gave supplemented with patients’ short notes. For the “Happy” status,
positive feedback regarding the usage of the system during their 30.69% (665/2167) of entries had additional notes. For “Neutral”
interviews. status, 59% (33/56) had text notes in the entries. For the
“Unhappy” status, all 18 entries consisted of notes input from
The patients also showed greater awareness of copresence
the patients. For the “Very unhappy” status, 71% (17/24) of
enhancement design mechanisms that we associate with the
entries had notes input. The result shows that when patients are
interview responses such as “not feeling alone,” “knowing I am
in negative mood, they would like to express themselves with
monitored,” and other similar phrases. They reported that they
the support of text messages and to improve nurses’
felt relaxed to know that their dialysis parameters and treatments
understanding on their status. The patients also expressed that:
were being monitored, especially when they received
“When I am not feeling well, I want to get the nurses’ immediate
acknowledgements from the nurses after submitting their
attention” and “I am glad that they are paying attentions to our
dialysis-related data. When asked about the functions of entering
problems and emotions.”
notes and emotions into the system, one of the patients
mentioned, “It is comforting to know that my results are being We also coded the notes entered by the patients into the system,
monitored and you are not alone.” As the negative modes (Very which fell into three categories: (1) describing health status,
unhappy and Unhappy) usually get the fastest response from such as “a bit dizzy in the last hour,” “notice my BP increasing,”
the health care professionals, the patients who expressed “my bleeding didn’t stop quickly it took almost 2 hrs,” “all
negative emotions also expressed that they felt “care and good,” (2) greeting to health care professionals, such as “thanks,
responsiveness from the health care professionals all the time.” Maryann,” “have a nice day,” “A big smile”; this type of
The copresence enhancement design of the system was shown message is very common for the entries “Very happy” and
to improve the mutual attention and mutual emotion for “Happy” emotions, and (3) expressing technical difficulty, such
patient-nurse communication. The patients mentioned being as “Power failure after 30 mins.” The patients mentioned that
“motivated to keep dialysis schedule” by the features in the app. that by entering notes to the system, their queries can be quickly
In addition, the patients mentioned that they may append some attended by the health care professionals and they do not need
notes to some submitted entries as they know “the nurse will to wait till next consultation. They also mention it is an effective
get the message.” way to communicate with staff and feel they are “virtually
connected” with the staff all the time.
We further analyzed the entries with notes appended. Out of
the 2757 entries created during the study period, 989 entries
also said that these patients were also treating them as friends, suggest that social and emotional needs of users are overlooked
so the system still maintains a certain level of connection in current solutions [12]. Patients expressed that better
between patients and them. The digital log kept a history of connections were built with staff through submitting emotional
patients’ dialysis-related data and allowed nurses to track feedback for the dialysis session. The design of one-click
changes in the patient’s dialysis parameters over time. The feedback function is also highly regarded by the nurses.
system also enabled nurses to change dialysis prescriptions and
patients’ dry weights in a timely manner, prompting patients to
Limitations and Future Work
know that they were continuously monitored by nurses. This study has a few limitations, but it opens up exciting avenues
for future research. First, there is no comparison group in the
Discussion study, since the aim was not to establish causal relationship,
but rather to reveal in-depth insights based on a combination
Principal Considerations of subjective and objective data. Future study can plan for a
This study is one of the first studies on copresence in remote randomized controlled trial and draw causal relationships
monitoring in health care settings. Despite many efforts devoted between system usage and clinical benefits. In the future, we
to building and understanding the effectiveness of plan to conduct a prospective study to measure the long-term
computer-based self-monitoring systems [10,11], few studies benefits to patients and on the efficacy and productivity of health
have looked at the importance of enhancing the social emotional care professional’s care delivery with the use of our copresence
needs of patients. Our study indicates that equipped with the enhancement mechanisms. Second, feelings such as isolation
copresence enhancement mechanisms, the HHD system received were not directly measured using questionnaires. The current
positive feedback from both patients and nurses. The field trial study only interpreted such meanings based on the qualitative
implies that HHD might reduce patients’ feeling of isolation data collected through interview. Future studies should include
and anxiety caused by independently conducting hemodialysis quantitative measurements of feelings and emotions. Third,
treatments at home. there might be other possible features that can be implemented
to enhance copresence. For example, studies have found that
Although the system usage was voluntary for the patients and using an avatar can enhance perceived copresence in the context
they could still enter their HHD-related data into the of teleconferencing and virtual learning [36]. As this study was
conventional exercise books without using the app, this mixed to test the idea of copresence enhancement mechanisms while
method study revealed that the app usage has achieved its not overloading patients with too many functions, these features
effectiveness as designed. With the feeling of being monitored were not implemented in the HHD system. Future study can
and connected to their nurses at all times, patients’ motivations definitely implement and test the effectiveness of different
to adherence was increased. The system empowered patients to copresence enhancement features. Additionally, we plan to
better understand and take care of their health care and therefore further complement our copresence mechanism by incorporating
suggests that the system has the potential to improve patient a video conferencing tool to improve communication between
uptake and retention on HHD programs and improve patients and health care professionals and to ensure the safety
relationships with their nursing staff. The nurses also felt assured of patients doing dialysis at home, as videoconferencing can
to have a simplified view of patients’ emotions and dialysis enable assessment of patients’ fluid status, visual inspection of
parameters. vascular access integrity, dialysis machine malfunctions, and
Our study has demonstrated the effectiveness of copresence alarms.
enhancement mechanism in the context of remote monitoring Conclusion
of dialysis parameters in patients on HHD. IT-enabled patient
In this paper, we propose an exemplary design of an HHD
monitoring is a trend and the benefits have been demonstrated
system by incorporating copresence enhancement mechanisms.
including reducing nurse-patient ratio, reducing operational
The design was able to address the challenges of monitoring
cost, and improving data accuracy. There are also issues and
patients’ dialysis-related parameters while they are on HHD
challenges with the use of technology, and a significant one is
and their feeling of isolation when conducting these treatments.
that patients are not able to have face-to-face communication
Our user-centered HHD system was designed to enhance
with health care professionals and may feel isolated and lose
nurse-patient mutual attention and emotion without overloading
compliance and confidence through the self-disease management
them with complicated functions. The proposed mechanisms
process. While current ways to reduce patient isolation require
were shown to improve the feeling of connectedness with
additional investment of physicians’ and nurses’ time, such as
clinicians for the patients, improve adherence to their dialysis
increasing standby hours or having a video conferencing call,
treatments and schedules, and also enhance emotional well-being
our study proposes a concise design by introducing functions
of patients. It is one of the first studies to address social concerns
like sharing emotions using emojis, sending quick notes, sending
and emotional feelings for patients on home dialysis. Our results
acknowledgment, and having a prioritized response to patients’
from patients and the health care team have been positive and
records. The features provide health care professionals a
affirm that the proposed copresence-enhanced mechanisms have
preliminary filtering of patients’ situations and provide patients
many benefits to HHD. We suggest that our copresence
the feeling that they are cared for and monitored constantly.
enhancement mechanisms are relevant to other remote chronic
Our study also highlighted the importance of communicating disease management systems.
emotions with health care professionals. Prior studies on telecare
Conflicts of Interest
None declared.
Multimedia Appendix 1
Survey and interview instruments.
[PDF File (Adobe PDF File), 26KB-Multimedia Appendix 1]
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Abbreviations
CKD: chronic kidney disease
ESRD: end stage renal disease
HHD: home hemodialysis
Edited by G Eysenbach; submitted 29.11.16; peer-reviewed by N Goonawardene, X Wang, T Cui, CF Chung; comments to author
08.02.17; revised version received 13.05.17; accepted 27.07.17; published 29.08.17
Please cite as:
Liu N, Kim J, Jung Y, Arisy A, Nicdao MA, Mikaheal M, Baldacchino T, Khadra M, Sud K
Remote Monitoring Systems for Chronic Patients on Home Hemodialysis: Field Test of a Copresence-Enhanced Design
JMIR Hum Factors 2017;4(3):e21
URL: http://humanfactors.jmir.org/2017/3/e21/
doi: 10.2196/humanfactors.7078
PMID: 28851680
©Na Liu, Jinman Kim, Younhyun Jung, Adani Arisy, Mary Ann Nicdao, Mary Mikaheal, Tanya Baldacchino, Mohamed Khadra,
Kamal Sud. Originally published in JMIR Human Factors (http://humanfactors.jmir.org), 29.08.2017. This is an open-access
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which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR
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