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RESEARCH REPORT
Topic:
Should wearable devices, mobile apps and other user-generated
data be included in the Australian eHealth Record ?
Need to fix:
• Need a clear methodology
• application of appropriate techniques of analysis to the research data
• Clear description and sound application of research method(s) appropriate
to answering the research questions or solving problem
• Research questions
Table of Contents
1.
Abstract..................................................................................................................................... 1
1.1
2.
Key Words ................................................................................................................................. 2
Introduction .............................................................................................................................. 2
2.1
Background ................................................................................................................................ 2
2.2
Stakeholders ............................................................................................................................... 4
2.3
Aims and Objectives .................................................................................................................. 4
2.4
Methodology .............................................................................................................................. 4
2.5
Significance ............................................................................................................................... 4
3.
Wearable Devices ..................................................................................................................... 5
3.1
Introduction ................................................................................................................................ 5
3.2
Standard for Adoption................................................................................................................ 6
3.3
Use of wearables and health & fitness apps in health industry .................................................. 6
3.4
Wearables & apps specifically generating data for healthcare professionals ............................ 8
4.
Adoption of smart wearables and apps data ......................................................................... 9
5.
Systematic review on Push and Barriers for adoption and user of user generate data ... 10
5.1
Systematic review .................................................................................................................... 12
5.1.1
Inclusion Criteria ........................................................................................................ 12
5.1.2
Exclusion Criteria ....................................................................................................... 12
5.2
User’s Perspective .................................................................................................................... 13
5.3
Health Professional’s Perspective ............................................................................................ 14
5.4
Fit for Purpose ......................................................................................................................... 16
6.
5.4.1
Which conditions would they adopt it quickly ........................................................... 16
5.4.2
In which conditions they will hesitate ........................................................................ 16
Should user generated data be included in the Australian EHR ....................................... 17
6.1
Health Professional’s Perspective ............................................................................................ 17
6.2
User’s Perspective .................................................................................................................... 18
6.3
Barriers for adoption ................................................................................................................ 19
6.4
Condition for acceptance ......................................................................................................... 19
5.4.2
In which conditions they will hesitate ........................................................................ 16
7.
Future research ...................................................................................................................... 20
8.
Discussion ............................................................................................................................... 20
8.1
Summary of findings................................................................................................................ 20
8.2
Users ....................................................................................................................................... 22
8.3
Health Professionals................................................................................................................. 23
8.4
Other Stakeholders ................................................................................................................... 22
8.5
8.4.1
Government ................................................................................................................ 23
8.4.2
Insurance companies ................................................................................................... 25
8.4.3
Wearable manufacturers ............................................................................................. 25
Conditions who would benefits ............................................................................................... 25
9.
Conclusion .............................................................................................................................. 26
10.
References ............................................................................................................................... 27
Table of Figures:
Death amenable to heath care .................................................................................................... 3
IDC Worldwide Quarterly Wearable Device Tracker ............................................................... 8
Research Triangle Institute. "Patient Generated Health Data." ............................................... 11
1. Abstract
The world is changing very quickly and each and every part of human life is affected/benefiting
by technology. Technology brings a lot of comfort and ease in the human community. The use
of technology helps health professionals and patients to save lives and provide better health
care. Using smart phones and wearable devices makes monitoring and keep track of your health
easier than ever. [1, 2]
Increasingly people are using technology and also getting benefits of them. Lot of smart devices
for monitoring health are available and lot more are in manufacturing phase. [2] The main
purpose of these devices is to help getting a normal and healthy life, working proactively and
save the lives [3]. The quality and functionalities vary a lot depending on the type of object and
their purpose. Some are providing accurate data or advice (e.g. need to work out more), and
can be used by health professionals, some are not reliable and should only be used for fun. [4]
According to the World Health Organisation’s eHealth is
‘The combined use of electronic communication and information technology in the health
sector.’ [5]
E-Health needs more sophisticated, secure and trustworthy communication with bigger scope
and different channels, it involves different professionals and merge them with patients to get
a proper output. [6]
Australian eHealth record ‘My eHealth Record’ (MHR) previously called Personally
Controlled Electronic Health Record (PCEHR), is a secure online health system. It was
launched on 01 July 2012, it allows an individual, doctor, hospital and any other healthcare
provider, to record and store the health related detail of patient. Nationwide implementation of
new system always faced challenges and need to work hard and updates according to the needs
of stakeholders, so that the system can be implemented and get favourable response and
adaptability from the users of that country.[7]
Another reform is coming in the Australian eHealth System with the new name ‘My eHealth
Record’, inclusion of Opt-Out model is expected in 2016. There is an option for the account
holders to include their health data itself, it is also possible that users of smart wearable and
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mobile applications can include their health and fitness monitoring data into their MHR
account, next question is the consideration and acceptance of this uploaded mix data for the
health professionals [8].
1.1 Keywords
eHealth, mHealth, health device, smart wearable, wearable tech, EHR, smart watch,
health monitor, Health Tech., personal health, Adoption barriers.
2. Introduction
2.1 Background
The Healthcare system is an important part of a society, for the prosperity and
development of a country, and it depends on the best available health care system for
example if in a society or a country, the health system is working properly has
consequences on the prosperity of their country, sick body also develop sick minds.
Some third world countries have a poor health system and instead of getting a
contribution from their people they are forced to spend lot of money on their health
conditions. [9]
Now technology is rapidly moving towards mobile technology and lot of smart
wearable devices and mobile applications are available and in use to monitor different
health statistics (vital signs) of users. The Australian eHealth system is currently in its
initial phase, the use of these devices and the data acquired from them may give more
benefit if included in the health record either manually by the user or through digital
link. [10]
Australian has a good health care system, people of Australia enjoying free medical
treatment regardless of their working status compared to America, but it is still not
perfect and required to do more, we can learn from different outcomes and lessons from
different health systems in the world like Canada, UK, Nordic, European and Singapore
systems, these are good examples to be considered when overhauling current system.
[11, 12]
2
Australia has the lowest rate of mortality amenable health care, according to the
Commonwealth Fund International Health Policy Survey 2011 (as shown in the picture
below), but it is lacking behind the use of latest technologies in the health care system
as compared to the other advanced countries. [12]
The Australian health system is more efficient than the one of the UK, Canada and US,
a Bloomberg study published last year on 18-Sept. 2014, shows Australian ranked 6th,
with 82.1 years life expectancy, GDP and per capita cost, UK ranked 10th, Canada, 21
and US 44. [13] Beside all these achievements, this system still needs a lot of
improvement and in addition it needs to get/keep the trust from Australian population.
[14] Like other countries such as USA, Canada and UK, Australia is facing problems
with their health system such as shortage of health professionals, ageing population,
increased demand for better health services, expensive latest technologies and their
implementation costs everything increasing the health budget of government and
creating pressure to fix all hidden and unhidden problems of these systems and
increasing the budget to implement new systems with latest technologies, so that they
can minimize the problems and fulfil the expectations of their citizens. [14]
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2.2 Stakeholders
Australian Government, medical professionals, Australians healthcare institutions,
insurance companies, smart wearable devices manufacturers and IT profesionals.
2.3 Aims and Objectives
My research investigates whether wearable devices, mobile apps and other usergenerated data should be included in the Australian my eHealth Record (MHR)
(previously called PCEHR) and would it help or slow down its adoption by users and
health professionals.
My research also focusses on the credibility of smart applications and wearables data
and either it is acceptable for the health professionals to be considered while
establishing a diagnosis on their patients and under which conditions and/or which
situations, this data can be useful.
Another focus of this research is to find out whether the users of smart wearables and
apps attitude are interested or willing to include their health and fitness monitoring data
in their eHealth record and make it available for their treating GP or personal trainer.
2.4 Methodology
Current research generated data in different stages. First stage is literate review, which
was done to search the adoption of smart wearables and applications related to the
health industry next stage of research finding is the mix of data, generated by these
smart devices, applications, Australian users should be included in their eHealth record,
next stage is to analyse the adoption of these wearables motivate or slow down the
people to use eHealth system and on lastly search the adoption criteria of this data by
the health professionals.
2.5 Significance
This research study discusses the significance of wearables and smart apps data and
inclusion of this data into the users personal eHealth record, and either it should be
added into the health record or it is just valid for monitoring and fitness purposes. The
research also help to check if the data and use of smart wearables for health related
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purpose may help to maintain the healthy lifestyle indicate any discrepancy before it
hurt badly.
Moreover, this study also discuss the health professionals and users acceptance criteria
and barriers of these wearables and apps data. Research also conclude if adaption of
these wearable can increase the number of eHealth users and what are the conditions
and situations where user generated data can be acceptable.
3. Wearable Devices
3.1 Introduction
Wearables are devices that commonly serve as electronic companions and intelligent
assistants to their users, and are typically strapped to their users' bodies or carried by
their user. Wearable may have access to a wide variety of sensors, such as barometric
pressure sensors, global positioning system devices, or a heart rate monitor for
determining the heart rate of its user, brain activity, blood pressure alert, glucose level
monitoring and alert, electrocardiogram (ecg or ekg), dehydration, ingestion, oxygen
level, pain radiation and skin monitoring. Wearables also may have access to a wide
variety of non-conventional output devices, such as display eyeglasses and tactile
output devices. [15]
In the wearable market short history, a reasonable gap has shaped between smart
wearables and basic wearables (devices that don't run third party applications, and
incorporates most fitness trackers). Cost and functionality are the fundamental contrasts
between the two category, and that gap is expected to increase in future. For
manufacturer concentrated on basic devices, the challenge will be to contend with the
extra features offered by smart wearables. [16]
Smart technology, especially regarding healthcare will be an integral part of our future
society. Wearable device is another addition it can be used to monitor people’s health,
provides significant information about individuals, these devices are being worn by
many people to track their fitness, it can track their running speed, distance area, heart
rate, walking steps, etc. These wearables could include but are not limited to wrist
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wearables, or bracelets information created with these devices can be used by health
professionals if the need arrives and or accepted by the medical professionals. [17]
ABI research report shows incredible growth of wearable devices until 2017. The report
says in 5 year time it will increase from 20.77 million to 169.5 million devices, places
also includes within clinics and hospitals, manage chronic conditions and remote
patient care. [18][19]
3.2 Standard for Adoption
People will only wear these kinds of devices if they are comfortable with it, so the
wearables have to be ergonomic, weightless and portable so the user feels comfortable
wearing it and wouldn’t get disturbed. These should also be user friendly, easy to use,
easy to operate by anyone whether they are technology enthusiasts or someone who
hasn’t used technology before. [20]
Wearable devices can also use cloud to store the data so the user can have access to it
anywhere in the world. The information will be uploaded to the cloud to prevent data
loss and to grant access to health professionals. However, some people might argue that
storing data on the cloud is not safe and there is no privacy where a skillful hacker can
access anyone’s personal information specifically information regarding their health.
[21][22]
The system for wearable devices should be minimally invasive for health monitoring,
it should be flexible and comfortable for the human body. It should work in any type of
weather, whether it be pouring down rain or the sun baring down at 40 degrees Celsius.
The wearable should provide direct feedback to the user to improve their awareness and
to allow better decision making. [23]
3.3 Use of Wearables and Health & Fitness Apps in Health Industry
A wearable device can be described a device with a biosensor to monitors physical
activity of a human and generate data. Some wearable devices are particularly relates
to monitoring health, these can be smart watches, smart activity monitors, smart
clothing, patches etc. Until today most wearable devices focused on monitoring
exercise, heart rate and other body activities, but in future devices there will be
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analysing of data and more enhanced functionalities are coming. some medical related
functions mentioned earlier in addition these wearables have features to benefits the
handicaps. These wearables and smart applications are not just for medical or clinical
users but also for the use at workplace and in normal healthy life as well. [23, 24]
The implications and uses of wearable technology are far reaching and can influence
the fields of health and medicine, fitness, aging, disabilities, education, transportation,
enterprise, finance, gaming and music. The goal of wearable technologies in each of
these fields will be to smoothly incorporate functional, portable electronics and
computers into individuals’ daily lives. Prior to their presence in the consumer market,
wearable devices were primarily used in the field of military technology and had the
biggest implications for healthcare and medicine. In fact, just 10 years ago, medical
engineers were talking about wearable devices which could unobtrusively monitor the
health and well-being of patients in the form of a “Wearable Motherboard™” or the
“Smart Shirt,” aimed at monitoring vital signs and sending that biofeedback
information to a hub station in real time. [25]
Smart wearable devices specially for medical and clinical purposes has a huge and fast
growing business market, a Juniper research published on 9th of September 2014, shows
there will be 25%-35% annually growth expected in the next three years, in this research
report they also mentioned that smart watches and smart glassed will get the major share
of sales in the next five years. [26]
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Source: IDC Worldwide Quarterly Wearable Device Tracker, June 18, 2015. [27]
3.4 Wearables & Apps specifically generating data for Healthcare professionals
Smart wearables especially designed and manufacture for the medical industry is not
only benefiting acute patients but also going to change the way healthcare industry care
the patients. Asthma Monitoring and Management wearable is one of health related
future wearable device, which has the ability to provide an intelligent health monitoring
tool for the asthma patients. A mobile application is also connected with this wearable
which enable real time asthma monitoring data and if any problematic situation occur
like asthma, it create alert with the treatment plans and symptoms treating information.
It is still in the designing and production phase, but definitely will be a big relief for the
asthma patients. [28]
These smart specially designed for healthcare industry also getting approval from
regulatory authorities to prove their authenticity one of these wearable is “HealthPatch
MD” for healthcare professionals. it is a reusable biosensor to help tracking important
patients information like, heartbeat, temperature, walking steps and if fell down
position of body. To see the real time data it can be connected with any mobile device.
This product has clearance from Food and Drug Authority (FDA) America, registration
in Canada and regulatory approval for Europe as well. [29]
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Google lens from Google X’s Life Sciences division is another smart wearable. It is
such a remarkable device for diabetic patients. Google lens will detect the glucose level
in the human body from an eye tear and send information to the linked application. A
renowned pharmaceutical company Novartis providing their expertise in this project.
The data produced by this wearable is more likely be acceptable for the health
professionals and also benefiting a huge number of diabetic patients. [30, 31, 32]
Obesity is the biggest health issue in Australia and around 61 percent of adult
Australians are reportedly obese, the Australian Government developed a useful app
“Swap It Don’t Stop It’ it help citizens make healthier choice, show how to make
smarter food selection from swapping between food items to save calories. With this
app user can track their progress and set alerts. Same like this ‘Shape Up Australia’ is
another app from Australian Government. [33, 34]
Microsoft’s Microsoft HealthVault is a eHealth Record web application for personal
health record, it stores and maintain fitness and health data. This is for both health
professionals and individuals. Multiple individuals may be authorised to access the
HealthVault account. Another quality of HealthVault is transformation of fitness and
health data from different devices, 80 devices connect with HealthVault in the US
device types. Many devices connect through the PC using HealthVault Connection
Centre. Future devices use wireless technology to communicate directly to the cloud.
[35, 36, 37]
4. Adoption of Smart Wearables and Apps Data
Wearable devices can continuously measure and monitoring of the physiological and
biomechanical systems of the human body as well body movement, user can capture data on
their behavior to monitor their fitness and health or to enhance how they engage with their
external environment. Wearable technology attracts a wide range of people including athletes,
health professionals, and fitness trainers. [38]
Developing countries are using latest technologies and easing their lives, eHealth system is
properly implemented and giving significant outcomes, and proving that this is an essential
requirement of every country. Modern society cannot be completed without the use and benefit
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of latest technologies. Paper system is replacing with digital system in every part of humans
lives and it is prove that digital is more powerful and beneficial for the humans and advanced
nations like Europe, UK and America are using these in their health system, and one in three
UK and USA citizens are willing to use these smart wearables and also happy to share the data
with their healthcare professionals. On the other side 88% health professionals are happy if
their patients monitoring their health with these smart devices, these are also saving the time
of healthcare professionals when they are planning to examine the patient, because they have
the monitoring data of their patients before they arrived. [39, 40]
A survey of 1,000 UK adults from KPMG has found that though privacy concerns remain,
consumers are open to sharing health data with certain entities. 74% of respondents were ready
to share health data collected via wearable or fitness band with their GP, and almost half of the
respondents were open to the NHS streamlining storage of medical records at a single national
database to facilitate access to medical practitioners across the country. However, only 7%
were open to wearable data being shared with their employer while just 8% were ready for a
private firm to undertake processing of data. The survey highlights that although UK
consumers are happy to use wearable devices to report their health statuses back to their GP,
they are less than comfortable for the data to be shared and stored with other entities, including
healthcare providers. [41]
Like the other areas Australia is again behind those countries in term of acceptance of these
smart wearables data for the health professionals. Australian government is still struggling to
provide this facility to their people and they even could not rectify and solve the problems of
eHealth system and it is still not getting proper response from the Australians and healthcare
professionals. Now after the permission to add data itself by the My eHealth account holder
adding these monitoring data, it can be helpful for the health professionals to see the progress
of their patients’ health and save their lives. [40]
5. Systematic review on Push and Barriers for adoption and use of user
generated data
During literature review reference from 42-46 discussed research papers discussed thoroughly
about the user generated data its acceptance and barriers which are creating hesitation to accept
this data for medical reasons, like the Van Doornik and William’s article of ‘Meaningful Use
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of Patient-Generated Data in EHRs’ published in 2013, because they discussed in detail about
the patient’s participation in EHR system, increase of mobile health applications and wearable
devices due to the participation of patient generated data, furthermore there is also a discussion
about the validity of this data and some parameters are defined such as a reliable technology to
produce health monitoring data, wearable device or mobile application is specifically use for
the purpose of monitoring health related data, also published a guidance of mobile medical
applications to be considered for health monitoring and data validation. [42,43] Same like this
a research paper published in the International Journal of Smart Home by University of
Technology, Sydney research on wearable devices focused in the healthcare industry and these
are providing benefit and interest in human health. They also predicted that in future these will
replace smartphones, noticeable advantage described is the collection of various data from
environment and human body in a real-time scenario. [44, 45]
RTI International, a world leading research institute published a white paper on patient
generated health data on 2012. In this publication quoting from American Medical
Association’s Greogory Abowed predicted that “within next five years the majority of
clinically relevant data will be collected outside of clinical settings’ he actually referring the
electronically recorded and share health data. [46]
Following picture shows how the data currently storing and how it will go in the future.
Source: Research Triangle Institute. "Patient Generated Health Data." April 2012. [46]
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5.1 Systematic review
This chapter is a systematic review of the literatures, smart wearables and data were
used as key words in the search of literature. The information extracted from these
literature. More than 100 literature reviews which were published from 2005 to 2015,
these literature selected while focusing on my research area and the research, discussion
and study. To identify the literature that are in line with the objective of our review I
defined a selection criteria to select the literature for my report.
5.1.1 Inclusion Criteria
•
Full version of journal and conference article that report on wearable devices data,
health related wearables, mix of data for eHealth system, user generated data
acceptance, privacy and security issues of user data.
•
Papers that propose a solution and discuss in detail about user generated data.
•
Paper written in English.
•
Papers published since 2005, but priority given to the latest published papers.
5.1.2 Exclusion Criteria
•
Summaries of workshops and tutorials, tile pages, editorials and extended abstracts
as they do not provide sufficient information to the objective of my review.
•
Workshop articles as they report on a study in its early stage.
•
Posters, as they do not provide enough information for the purpose of review.
•
Books and PhD thesis, as they are beyond the scope of this review.
•
Double entries. If an extended journal article found it will be chosen over the
conference article.
•
If a more recent paper is found, it will chose over its preceding paper.
•
Papers whose focus was not on user generated data, health related wearables data
and its acceptance.
•
Opinion papers, discussion papers and survey paper that do not relevant to my
research.
•
Any paper whose full text is not accessible.
•
Papers not written in English.
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5.2 User’s Perspective
Lot of people thinks they don’t need a wearable device big barrier is the cost, some
people believes these wearable price is not justifiable. 19 comments from MarchOctober 2015 found on Apple watch website and 18 were complaining about the price,
while discussing the features no-one discussed any feature to monitor their health or
fitness. [47]
Another reason is lack of awareness or less knowledge of technology. Majority of the
people are not good technology users, so a simple wearable device like a smart band is
more acceptable for them, as compare to a smart watches with additional functions
more people using bands for monitoring daily health maintaining activities.
Furthermore people don’t distinguish the functions between wearable devices and smart
mobile applications, even when these wearables connected with smartphone through
apps. [48]
Boosted development and usage of wearable devices a variety of form factors and
consequences have been created due enabling these devices for multiple purposes.
Despite the benefits and potential large usage also created privacy concerns. Smart
wearables regularly collecting, storing and transmitting data and dealing with personal,
sensitive and private information. This data can be available publicly and shared within
the user’s network as well as untrusted and or unknown networks as well. Wearables
are enable surveillance of individuals, their surroundings and behaviours, which leads
to severe privacy risk, threats and implications, these issues influenced not only the user
but also the organisation and society involved. Privacy being in the discussion for a
long time, this issue is not only related to the wearable devices and mobile technologies
but this is relatively a new area and complex to study [49, 50] Wearable devices,
mobiles apps and sensors continuously collecting data challenges users privacy.
Despite these issues and users have very less understanding about these even some have
no concern about wearable privacy.[51, 52]
Privacy is one of the main concern and challenges yet to be solved not only because
wearable devices store and process information about the users but due to the ability to
do it continuously, pictures the behaviour of user surveillances to identity locations,
13
fitness level and health issues. [53, 54, 55] A report shows 94 percent US consumers
have read or heard that in the past year most of the retailer data breaches, this increased
their concern about their personal data privacy.[56]
To see the privacy concern from the users comments, some armbands and smart
watches websites studied, these included LG Lifeband Touch, Sony SWR10, Apple
Watch, Qualcomm Taq, Razar Nabu, 27 comments, Google Glass, Google smart lenses,
EmoPulse Nano Glass, Laser See Tru, Vuzix smart sun glasses 34 comments related to
privacy. To get this data I searched Amazon, BestBuy, CNET, ComputerWorld,
DigitalTrend, ExpertReview, PCMag, GizModo, Geek, PCWorld, TechReader,
Wearable Computing Review, Wearable Technologies, ZDNet, PhoneArena and these
websites forums. Most of the users have less concern about their privacy, their most
concern was how much function they are getting and how accurate and efficient these
devices are working. Most of them have no issue about the collection of data like heart
rate monitors, activity trackers, glucometers, step counters etc., they have no idea how
this data can be misused. Users who has knowledge about the cloud storage data has
some concern that anyone can use their personal information without their consent for
malicious purposes, they are more concerned if their device is connected with the social
media and this data is shared or stored on these sites. [57]
About the privacy concern people need to be educated and aware that wearable devices
collection and data storing are often personal, confidential, private or sensitive and
sharing with untrusted or unknown persons or companies can leads to serious privacy
issues. This issue need to be work out quickly by the manufacturer
5.3 Health Professional’s Perspective
Health systems and doctors have been trained for the one on one interaction, just
shifting and saying now we’re going to do that remotely and we’ll send it all to you?
Healthcare professional are not going to embrace that until they know exactly where
it’s coming from. They may be more willing to trust a digital health tool’s readings than
a patient’s manual entries. Currently patients mostly enter the data manually, the health
system is working on integrating with devices so patients can enter data automatically
from wearables, apps-connected fitness trackers or health devices. So the doctors have
14
to log into the portal to access the information because doctors are hesitant about
making manually entered patient data part of the patient’s legal medical record. They
are also afraid if they have this information and did not act on it they could be liable.
There is a whole bunch of reasons why clinicians don’t want this information. It doesn’t
mean it’s not valuable, but it doesn’t necessarily need to be integrated into the eHealth
Record. [58]
Doctors find little value in the way activity data from patients’ wearables is presented
to them. Generated data is huge and there is no mechanism to filter and analyse of this
data, doctors are busy in their profession and don’t have time to see a whole database.
Chief medical officer of Dell’s healthcare and life sciences division Nick van
Terheyden shows concern that wearable devices flooding of data can overwhelm
doctors and prevent them from seeing what’s important. He said I don’t care my patient
took 10,000 steps today, his intention is that wearable data is only useful if it is
presented in the context of a person’s overall health, like data can be used for
observations and patients can make changes to improve their health or doctors could
reconcile and take action. [59, 60]
Health professionals can utilise the data/information to analyse or diagnose patient’s
condition before turn out to be seriously ill. This data can lead to more personalised
healthcare and in some cases make medication unnecessary, for this purpose,
requirement is proper analysis of the data and keep connected and keep engaged the
users to get correct result. In spite of this another concern from doctors is trusting that
patients took their own health readings correctly or aren’t accidentally submitting
readings from someone else. Both patients and healthcare professionals expressed
apprehension about the potential for patient created mistakes in the medial data [61, 62]
Internet based anything has a major concern of data protection in addition to the
privacy, ethical and legal issues. Patient’s confidentiality, managed and use of his/her
data should always need highly consideration. A major weakness that concern security
is when data communicates between device and application or cloud, a secure system
and channel need to protect the data. [63] Smart wearable and applications have the
ability to store and transfer data, which create security concern, in spite of the fact that
15
the information being put away may be less important and harmless, it doesn't separate
about the sort of information being put away or exchanged.[64 65]
5.4 Fit for Purpose
Patients have always played an important role in their own health care. But new digital
health information management tools are enabling patients to become even more
engaged. Patients now have access to personal health records, mobile applications,
wearable devices, and other interactive websites designed to help them meet their health
and wellness goals. These devices, apps and websites, generating and maintaining
patient’s data, if patient want this data to be share with their healthcare professionals,
there will be some conditions from the healthcare professional to accept it. [66]
5.4.1
Which conditions would they adopt it quickly?
A patient has a condition where he/she is advised User generated data accepted
by the health professionals, few of them are, if it is :
-
For investigation purpose only.
-
In a normal condition not in an emergency.
-
Generated by a device prescribed by the patient’s doctor.
-
Wearables used to generated data is particularly designed for medical
purpose.
-
Generated for the medical purpose not for entertainment or any other
purpose.
-
Must be entered accurately and maintain its authenticity.
-
Regularly updated.
-
No a huge database, analyzed and concise by the person who has ability to
understand medical terminologies.
5.4.2
In which condition they will hesitate
Medical terminology is not easy for everyone and it is more likely to make
mistake or enter wrongly it someone is not good with technology in addition to
the terminology. There are more condition where health professionals hesitate
to accept this data. Few are:
•
If there is an emergency and patient is not in his conscious.
•
Data generated is not for medical purpose.
16
•
Data is not updated and organized properly.
•
Big amount of data
•
Uploaded by a person who has no or less knowledge of medical
terminology.
•
Updated occasionally not regularly.
•
Used an unauthenticated device.
6. Should user generated data be included in the Australian EHR
Having people participation in electronic health record will be good and effective because they
have privilege to enter and check their own medical data and its accuracy, it also help the
healthcare professionals to get extra information while examining a patient. [67]
Inclusion of wearable data into My eHealth Record by the user, provide opportunity for the
record holder that he/she is also a part of that system and contributing towards their health.
This incentive will also encourage others to register and start using eHealth System to monitor
their health and fitness, on the other hand patient participation also help healthcare
professionals to provide better patient care. Although patient is responsible of the accuracy of
their own data, it is also a challenge to get constantly a good quality reliable data uploaded and
keep updating to become a useful for clinical diagnosis purpose.[68, 69]
6.1 Healthcare Professional Perspective
However, many healthcare professionals are not happy with the patients contribution in
myHealth, their says patients has too much control on their health record, adding more from
Australian Medical Association, they argued that healthcare professionals can’t focused on
a patients control record their objection is that the patients can delete or alter their own
medical record which is embarrassment for the patients about their health condition, this
type of data might change a diagnosis and doctor will be liable for that.[70, 71] Even if all
of the data was accurate, the next major hurdle is the individual doctor’s willingness to dig
through it all. Consider that most doctors are already very busy and that they do not have
an automated means of pulling in your data to extract relevant information. They would
need to review the information in the same way that you do, and they may not have the
time to do it. [72]
17
Healthcare professionals accepted that these smart devices helping people to monitor and
maintain their health and fitness level. Health professionals are also using these devices in
their practice facilities and happy with their result. Usage of smart wearables in telehealth
and healthcare industry and increasing very fast, well saying by the Rob Khamas in
Pulse+IT article that “Australian practices and clinics need to embrace this technology
sooner rather than later, as the benefits outweigh possible costs and training. [73, 74]
Australian health system is far behind as compare to the other advanced countries in term
of acceptance and use of smart wearables data in health industry, this area need to be
focused more and act quickly because the wearable technology spreading very fast and
predicting the use of this technology in every part of human lives in future especially use
of these technology in the health industry is rapidly increasing and benefiting the lives of
people.[75, 76]
6.2 Users Perspective
Like the whole world wearable devices are the most popular trend in Australia as well, now
a days, especially people are using these devices to monitor and maintain their health and
fitness level. An article published on a blog of PureProfile website conducted a survey and
contacted around 1500 Australians, outcome showed one in five have their own wearable
device and it is more popular in young between 30-34 years Australians where one in three
has their own wearable device. On the whole 71.8 percent users are under 50 years old,
approximately 71% adult showed interest to buy in the next 6-12 months’ time. 70.8%
Australians who bought wearable device said, this wearable help them to improve their
fitness and behaviour patterns. [77]
A report published on NBN Company’s blog stated that insurance companies already using
data from wearable devices to record the habits and health of their customers. Customers
using wearable devices to monitor and maintain their health could be used to discount in
their premium. Wearable devices help the users to achieve a better and healthier lifestyle
and companies are beginning to take this data even further. In future integration of wearable
in our daily lives may deliver a huge number of conceivable outcomes for the way that all
family members lives and connect with another. [78]
18
To monitor health and fitness with the help of wearable devices increasing the users of
these devices and providing facility to add this data into the My eHealth Record will help
increase the number of eHealth users, because people gets motivation from uploading
device data into their own space and as the volume wearable device users increases, so does
the eHealth users. As mentioned above 70.8% Australian bought and wearable device to
monitor their health and fitness but the same percentage of Australian are not register in
eHealth system. Wearable devices are not going to share these date it is user’s responsibility
to add it in the record and share it with their health professionals if they are willing to share.
Ownership of data is another concern
6.3 Barriers for adoption
The healthcare industry has not come to expect user generated data as a default means by
which to evaluate patient health. There are various challenges for healthcare providers to
get over such as maintaining privacy and security, dealing with expenses, and convincing
physicians that the device data is useful, trustworthy, and manageable. There’s also the
issue of getting physicians and other care providers to trust the data that patients provide.
Physicians may be more willing to trust a digital health tool’s readings than a patient’s
manual entries. Furthermore the information collected from wearable and apps give a
general sense of how to work on fitness and normal monitoring health, this is not medically
sound and enough to be considered of equal importance as the data collected in the doctor’s
office. [79]
6.4 Conditions for acceptance
There is no ‘one size fits all solution’ normally use of smart wearables and application data
in sense of monitoring and preventive manner are more acceptable, these devices provide
opportunity for monitoring individuals health, study shows that this information improves
quality of life due to healthy behavioural changes. [80] Generally in some situation user
generated data can be acceptable, such conditions like if wearable prescribe by the
physician for particular purpose such as monitoring blood sugar, blood pressure, cardiac
monitoring etc. [81, 82, 83] Many individuals with chronic diseases could benefit from
having constant remote monitoring and the best way to monitor a patient is through
understanding their interactions with their daily activities. Giving the patient the
opportunity to depart from the hospital and continue to monitor themselves will allow for
a more authentic representation and a more accurate assessment of physiological data. If
19
patients could be monitored reliably away from the hospital, this could decrease the cost
associated with the length of stay, which can greatly decrease healthcare costs and
unintended consequences. [84, 85]
7. Future Research
In the future research my plan is to research on the integration of user uploaded and
wearables directly uploaded health data into My eHealth Record and those steps which
make all this data meaningful for a healthcare professionals, what approaches or tools
healthcare professional needs to get a specific data which will become a ‘meaningful data’
and what should not be included and what is the definition of meaningful for a healthcare
professionals. Moreover enhancement of this research will be, to see either involving
someone else to process the data like a health professional, any sophisticated algorithm, a
software that analyses mix of data and create alerts to the GP or a treating healthcare
professional. Australia has a multicultural society what are the socio-cultural elements to
generate and sharing of this data from the user and Healthcare professional’s perspectives,
these issues specially the last one required the involvement of different communities
through surveys, interview or any other mean of communication.
8. Discussion
Companies and professionals are working hard to make improvement in wearable devices and
technology so that these things meet the needs of the user and healthcare providers, getting
hope that the use of these smart wearable will impact on practitioners and patients experience
to receive and administer better care. [86]
8.1 Summary of findings
A barrier in the acceptance of smart wearable/user generated data is the accuracy and
reliability of this data. Smart wearables sensors are also an important factor, these device
need to perform many trials to examine their accuracy and precision. In the market different
types and companies devices are available not all are reliable due to not performing proper
quality control check and not fulfilling the requirement of medical associations set criteria.
On the other side health professionals also need to consider this data if this is coming from
a good medical related wearable device, they can combine this data with their clinical
instruments generated data during assessments of their patients, some smart wearables are
20
in the market and lot more are coming which are specifically design for personal health
related purposes, even health professionals are using these devices successfully and happy
with the outcomes. [87]
Smart wearables which are specially design to monitor patient’s condition like monitoring
diabetes, blood pressure, and any other chronic disease, are getting more acceptance in
health industry contributing a lot in the monitoring and care of patients with the chronic
diseases. Fitness wearables are good to monitor health and change people behaviour
towards a healthier life and making a healthier community. Obesity is a big problem in
Australia and people are not ready to spend big money on wearable devices, bringing cost
in the reach of normal consumer will increase the users of wearable and motivate them into
some type of daily activity which will be good to maintain a healthier life style. GPs can
use this data to check their daily activities and advise them accordantly. [88]
Ethical and legal issues, like privacy and security of data are also major concerns, these are
not only related to the wearables and smart application, everything which has any internet
or sensors links has the same problem. If follows the rules properly and working within the
set guidelines these issues can be resolved. While everyone already using mobile
technology knowing these issues, popularity and trend toward wearable devices are not
going to be effected, but linking these device with the eHealth record to upload data will
create more problem for health record data, these devices and user can access their record
from different location without thinking secure or unsecure channels. [89]
Wearable are the advancement of modern healthcare system, accepting smart wearables
into the eHealth system will increase the registered users, these wearables providing
platform of modern tele-monitoring and involving individuals to participate actively in
their healthcare.[90]
Rapid increase of wearable devices force to work on joining wearable device data and
ehealth record system for that some barriers need to be clear one is to establish an
interoperable standards for healthcare professionals and users, next one is about the privacy
and ownership of data, a proper formal consent from the data holder, data access and
sharing, quality of data and another crucial part is training or workshop for the information
21
of this system are few important steps need to be taken by the government to get the fruitful
result from this technology.[80]
8.2 Users
My eHealth Record data is different from traditional, clinical data in two important
ways. One is user get and upload health information, second is user choose who to
share, when to share and what to share with healthcare providers. Sharing with
healthcare professionals, they can use this information to monitor patients remotely,
reducing clinic visit and perhaps even emergency room visits, also work proactively
and trigger alarm if data shows some discrepancy or health issue. [91, 92]
Data added in the eHealth record help improve quality and health outcome, electronic
health system make it possible to access, share, use and re-use information that was
once locked in paper charts kept by the individual healthcare professional. Portability
of this personal health related data transmit critical information to any other healthcare
provider in case of relocation or emergency. This medical history data is very important
for the new physician or care team. Patient don’t need to keep and carry their lab result,
test, scan images, procedure reports or drug list. Patients can leverage that access to
improve their health and manage their diseases. [91, 92]
Healthcare Professionals may need to build in process and time to evaluate this data
and decide where to add this into patient’s clinical record, as well as create a care plan
to encourage a patient to use a specific food or tracking device or app. Usability,
innovations in technology, education, health literacy, economic disparities, and similar
factors can be barriers to gathering, accepting data and using My eHealth Record. [93,
94]
In health and fitness devices increasing list of cybersecurity vulnerabilities create huge
risks to patients’ privacy and data security. ComputerWorld reported in June 2015
through a malware attack medical devices like blood gas analysers compromised and
provide access to the hospital networks to steal confidential data. Not all the users are
ready to share their data due to this reason but a huge number still want to share with
their doctors. [63]
22
8.3 Health Professionals
The barrier for healthcare professionals of users generated data acceptance is the
accuracy of smart devices generated and manually added data, on other words
healthcare professionals and doctors don’t trust these smart devices and obviously they
are not ready to consider this data because these devices and generated data has not
scrutinized according to the same standard the other medical equipment examined. Data
generated by these devices can be good and accurate but accepting these data may be
costing their liabilities. Possible human error making manually added data
unacceptable, users are not trained like a medical professional and without or less
knowledge of medical terminology it is hard to understand the links between the
medical data and health problems, moreover there is also a question mark on the data
either it is added genuinely and regularly or not. [95, 96]
User generated data if accepted can be benefit for the health professionals:
•
Remote measurement of patient status
•
Ongoing updates regarding patient status
•
Scaling of measurement capability previously only available in laboratory/clinical
setting
•
Facilitates feedback to patients
•
Adherence monitoring
•
Empowers patients to self-manage
•
Medical history of the patient will help to diagnose quickly and more efficiently.
•
It will help with real-time alerts and analytics as well as get information if
anything going wrong.
It is a challenge while using eHealth record to ensure electronically collected
information from wearable devices or applications platforms going into the medical
record, it should all be done with the consent of user/patient in writing and provide
information that how data is being collected, protected and shared.[97]
8.4 Other Stakeholders
8.4.1
Government
Government can play a number of important roles in increasing My eHeath Record
useage. At the infrastructure level, the federal government could catalyse development
23
and adoption of data and interchange standards for key MHR content areas. Relevant
agencies such as the Healthcare, insurance and social media should educated about the
use and benefits of MHR.
My eHealth Record covers many kinds of data including user generated data and
communication of data between different links need a secure channel to work with.
Need policies to answer important questions what should be or should not be uploaded
in the medical record and how and where is saved and who controls the data. How to
change or update information or data originally saved in the record, there should be a
technical capability to all labels to data elements that shows the origin even when it is
shared with anyone. Data coming from wearables directly essential to deciding whether
and how it should be added to the patient’s record.
▪
Feature a transparent, understandable, and easy to use online process that enables
users to share and update their data
▪
Accommodate the range of user capabilities, languages and access considerations,
including effective strategies for ensuring accessibility and usability of electronic
health information for people with disabilities and meaningful access to such
information for individuals with limited English proficiency
▪
Provide strong privacy and security protections
▪
How can regulations, certification, and standards support user data-sharing either
prior to a consumer’s clinical visit or at the point of care?
▪
What are the primary obstacles to the use and integration of eHealth record with
wearable devices in data and account access contexts?
▪
How can regulations, standards, and other policies best address these obstacles and
support the efficient use of information and critical health data, protect patient
privacy, etc?
▪
Make sure anyone who want to access to eHealth record will need to adopt greater
transparency in the way they use data, and may be punish if any misuse happens.
▪
Educate and encouraging people to use My eHealth portal to record, and manage
their health information.
▪
Promoting eHealth and IT tools to encourage users/patients and health professionals
to think and act as partners in managing health and health care.
24
8.4.2
Insurance Companies:
If insurance company have access to the eHealth data or smart wearable and apps data
coming automatically or added by users, it is their utmost responsibility to make sure:
•
Written permission from account holder should be acquired.
•
Only the authorised person access the information.
•
They should only accesses as much as they are allowed to know.
•
Confidentiality should be top priority. [99]
8.4.3
Wearable Manufacturers
Most of the consumers are not aware of the security and privacy risk until an event
happened and creates published in media, they trust on developers and manufacturers
to build and provide a secure system and device, they also confident that the hospitals
and their doctors systems are secured properly and their information is safe with them.
So concerns for the manufacturer of smart wearables and application developers are to
secure users data and protect their privacy. Federal Trade Commission (FTC) in 2015
already issued a guideline on privacy and security protection for all smart wearables,
applications and medical devices as well. Smart wearables with proper security can
provide better medical services and contribute in better in healthcare industry and help
the society to improve its health and fitness. [57]
When creating medical devices connected to the Internet of Things, manufacturers must
establish a secure hardware and software development process that includes code
management, build management, automated testing, streamlined packaging and
software delivery mechanisms. It should include source code analysis to identify
vulnerabilities as well as security-related testing to identify runtime vulnerabilities. [57]
8.5 Conditions who would benefit:
•
Patients with chronic illnesses will be able to track their diseases in conjunction
with their providers, promoting earlier interventions whey they encounter a
deviation or problem, like diabetes, hypertension, heart problem.
•
To monitor fitness level and perform daily activities to control and deficiency.
•
In an emergency condition where medical history and activity required immediately
to diagnose and treatment plan.
25
•
When a healthcare professional required to make a treatment plan.
•
When relocate from one place to another or changing of medical facility or choose
a new GP/healthcare professional.
9. Conclusions
Distilling this information down to care for an individual patient is often as much art as science. It
requires both patients and providers to listen and learn and it is much more than just applying
algorithms that automatically produce a care plan.
While the integration of patient-generated health information into my EHR, this information
can be valuable to healthcare professionals in adjusting treatment regimens, valuable to
individuals in understanding and improving their health choices, and valuable to the health
system in measuring and rewarding for health care quality. More studies and clinical trials are
needed to check the output of smart wearables to get a better data output and healthcare
professional acceptance. Including wearables data into the eHealth system will improve the
preventive health towards healthy society. Incorporating these wearables technologies now will
help the progress and increase favorable outcomes in the future.
Tracking wellness and health from personal fitness to elder care is a promising field for
wearable devices. Medical professionals consider the theory that detect developing conditions,
before it become critical, to look the changes in to the daily living activities through the user
generated data is the best way, fortunately smart wearables provide the opportunity of long
term monitoring of physical activity, behaviour and generate real time data/information.[100,
101]
26
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