Technology in Society 44 (2016) 1e9

Contents lists available at ScienceDirect

Technology in Society
journal homepage: www.elsevier.com/locate/techsoc

Health information technologies for patients with diabetes

Lara Khansa a, *, Zachary Davis a, Heather Davis b, Andrea Chin c, Heather Irvine c,
Linda Nichols c, Jeffry A. Lang d, Noah MacMichael a
a
Department of Business Information Technology, Pamplin College of Business, Virginia Tech, 1007 Pamplin Hall (0235), Blacksburg, VA 24061, USA
b
Piedmont Virginia Community College, USA
c
Virginia Tech, Northern Virginia Center, 7054 Haycock Road, Falls Church, VA 22043, USA
d
IT Security Operations, Virginia Tech, 1300 Torgersen Hall (0284), Blacksburg, VA 24061, USA

a r t i c l e i n f o a b s t r a c t

Article history: Patients with chronic illnesses, such as diabetes, need daily care and follow-up beyond occasional visits
Received 28 August 2014 to healthcare providers. Research has shown that overcoming a multifaceted illness, such as diabetes,
Received in revised form requires patients to be engaged in the monitoring and management of their own health. Health infor-
28 September 2015
mation technology (HIT) has been shown to empower chronically-ill patients to take charge of their
Accepted 5 November 2015
healthcare, and alleviate their daily frustrations while they strive to lead a normal life. In this paper, we
Available online xxx
surveyed 31 patients with diabetes to identify the major frustrations they experience daily, examine the
role of HIT in their current treatment, and identify gaps in their current care and education that, if
Keywords:
Health information technology
addressed, could improve their quality of life. Themes identified in our survey results include a lack of
Diabetes interaction with healthcare providers, difficulties in scheduling appointments, a lack of timely
Electronic health record systems communication with healthcare providers, and challenges in managing the complex care of diabetes. The
Survey contributions of this paper include a detailed set of recommendations on how HIT can be utilized to help
chronically-ill patients live a better life despite their illnesses, with a particular emphasis on diabetes
care and management.
© 2015 Elsevier Ltd. All rights reserved.

1. Introduction
Diabetes is a metabolic disease that causes individuals to have
high blood glucose levels because their body does not produce
enough insulin or because their body does not respond to the in-
sulin that they produce. This disease currently affects nearly ten
percent of Americans [1]. If the current trend ensues, it is expected
that 1 in 3 Americans will have diabetes by 2050 [1]. Type 1 dia-
betes often begins suddenly in young people and is not related to
obesity. Rather, it is caused by an autoimmune response that de-
stroys the body's ability to produce insulin. Type 2 diabetes, on the
other hand, is an insulin-resistant disease that is often linked to
obesity, family history, impaired glucose metabolism, and/or
physical inactivity. Once thought to be an adult-onset illness that
rarely strikes individuals under the age of 40, Type 2 diabetes is
* Corresponding author.
E-mail addresses: larak@vt.edu (L. Khansa), zached1@vt.edu (Z. Davis), hdavis@
pvcc.edu (H. Davis), aytchin8888@aol.com (A. Chin), HIrvine@ostglobal.com
(H. Irvine), lynnaloo@gmail.com (L. Nichols), jefflang@vt.edu (J.A. Lang),
noahm14@vt.edu (N. MacMichael).
now a growing problem among children and young adults [2]. Type
3c diabetes, also known as exocrine pancreatic insufficiency, occurs
when a patient has characteristics of Type 1 diabetes but it is
discovered later in life. Type 3c diabetes is relatively rare, ac-
counting for only 0.5e1.5% of all people with diabetes [3]. Unlike
Type 2 diabetes that is related to insulin resistance, both Type 1 and
Type 3c diabetes occur when the islet cells are destroyed by the
immune system. There is no known cure for diabetes, but the dis-
ease can be controlled through health management that includes
keeping blood glucose levels as close to normal as possible with
diet, exercise, and medications, possibly including insulin in-
jections [2].
For many years, patients with Type 1 diabetes were only able to
manage their disease with insulin injections that they were
required to take 4e6 times per day to keep blood glucose levels
under control. While this method of managing the disease is still
used by some people and has been mostly effective, it relies heavily
on the patient's memory. Often times, when patients forget
whether they have already received their insulin injection, too little
or too much insulin would be injected. If patients had taken an
insulin injection and had forgotten about it, additional insulin from

http://dx.doi.org/10.1016/j.techsoc.2015.11.001
0160-791X/© 2015 Elsevier Ltd. All rights reserved.
2 L. Khansa et al. / Technology in Society 44 (2016) 1e9
another injection would cause their blood glucose level to drop too
low, resulting in sweating, dizziness, headaches, and fatigue.
Conversely, forgetting to take the insulin injection would cause the
patients' blood glucose levels to become dangerously high. Prior
studies [4,5] have shown that health information technology (HIT)
can effectively decrease these memory lapses, and can help
improve the overall health of people with diabetes at a much lower
cost. The insulin pump, in particular, is an HIT innovation that
automatically administers insulin in a patient's blood stream;
however only basal insulin is administered in this manner. Patients
must still count the number of carbohydrates they consume and
input the amount of insulin needed to cover the intake. Addition-
ally, if blood glucose is elevated, the insulin pump should be cali-
brated to provide enough insulin so as to effectively lower the
elevated blood glucose level. A Continuous Glucose Monitor is
another tool that can be utilized with the insulin pump to assist
with keeping glucose levels within the prescribed control range.
Like the insulin pump, however, the glucose monitor has a plastic
cannula that remains under the skin, possibly increasing the dan-
gers of having an additional break in the integument. Additionally,
the Continuous Glucose Monitor is not covered by many insurance
companies creating yet another cost barrier [6]. In sum, there are
various HIT products that can effectively improve the health and
safety of patients with diabetes, but they often cause additional
frustrations for patients.
In this paper, we conduct a survey of patients with Type 1, Type
2, and Type 3c diabetes, to gage how, from their own point of view,
HIT can help them conquer their respective diseases and improve
their lives. The information gathered during this study allowed us
to make recommendations about how to best utilize HIT to alleviate
the struggles of patients with diabetes. Because of the complexity
of managing diabetes it would be ambitious to claim that HIT can
resolve all of the patients' frustrations; nevertheless, our findings
show that many of these frustrations emanate from the patients'
difficulties in closely managing their health, which can be greatly
improved with the help of HIT.
The rest of the paper is organized as follows. We first present
findings from a systematic literature review on how HIT has been
used to help patients with diabetes. We then discuss how we
collected the survey data and present demographics and other
characteristics of the surveyed patients. In the following sections,
we consecutively present our findings, a set of recommendations
and tools to better manage diabetes, and critical barriers to the
successful adoption and implementation of these recommenda-
tions. We finally conclude by discussing the contributions and some
limitations of the study, and by setting possible avenues for future
research.
2. Background
A systematic review of the literature was conducted using the
CINAHL database and the search terms “diabetes” AND “informa-
tion technology” with limiters of being available in full text, pub-
lished after January 1, 2005 and available in the English language.
This returned 32 results. After reviewing those results, 21 were
identified as not relevant to the topic studied because they either
examine a different disease or are aimed at providers instead of
patients. This left 11 articles for review. In examining the literature,
several themes were identified, including challenges in diabetes
management, difficulties with and between healthcare providers,
difficulty in scheduling appointments, and a lack of interaction with
healthcare providers. In reviewing each of these articles we did
notice that although many focused on patient research they were
not patient-focused; that is they did not discuss with the patient
how HIT worked for them personally.
One theme that was identified in 6 articles is that of the personal
challenges with managing the complexity of diabetes [7e12].
Lairson et al. [7] recognized that the complexity of the study,
necessitated by the complexity of the disease, decreased the ability
of patients to adhere to their treatment plans. Morrin et al. [10]
investigated in their study whether or not the use of an EHR sys-
tem improved patients' ability to manage their healthcare. The
authors found that, as a freestanding use of technology, EHR sys-
tems do not improve diabetes care. Halkoaho et al. [8] found that
the utilization of new technology in diabetes management might
increase the complexity of disease management for those with
limited technological skills. Kanstrup et al. [9] and Schiotz et al. [11]
conversely identified that patients and their families were able to
use various technologies to decrease and better manage the
complexity of diabetes care. Jaen [12] examined the use of HIT from
the healthcare providers' standpoint and discussed methods for
addressing the complex treatment needed to manage diabetes. In
sum, prior research has been ambivalent as to the benefits of HIT to
patients with diabetes, and has acknowledged the increased cost
and education necessary to implement HIT. None of the work we
reviewed denied that HIT could be beneficial; yet most noted that
the complexity of diabetes care management, in general, increases
difficulty.
Issues regarding communication with healthcare providers
constituted another commonly identified theme in 5 articles
[7,8,13e15]. Nobel [13] found that patients' ability to communi-
cate information electronically to case managers increased their
ability for education. Lairson et al. [7] and Adaji et al. [15] found
that improving communication between providers and patients
was challenging although most patients and physicians found the
ability to communicate via email helpful. Dorr et al. [14] imple-
mented a managed communication program for case managers
and patients and found that increased communication improved
glycemic control. Halkoaho et al. [8] reported similar results
when using an electronic method for tracking and communi-
cating with patients, although the target subjects were nurses. In
sum, most prior research identified the importance of commu-
nication between patients and their healthcare providers, but it
only captured the healthcare provider's point of view. For a
technological communication strategy to work, it would need to
meet the needs and abilities of both the patient and the
healthcare provider.
Endocrinologists are in high demand and often scheduling an
appointment with them is difficult. Frequently, appointments need
to be booked months in advance with limited ability to reschedule
[16]. This theme was identified in 4 of our reviewed articles
[7,11,14,16]. Prior research (e.g., Lairson et al. [7], Dorr et al. [14], and
Schiotz et al. [11]) explained the benefits of giving different mem-
bers of the healthcare team (e.g. nurses, case managers, and other
physicians) permission to view each other's online calendars and
make appointments. Hunt et al. [16] identified that patients should
have the ability to set their own appointments and that by doing so
they were more likely to be involved in their care.
We also noticed that the interaction between the healthcare
team and their patients using some form of information technology
(IT) impacted patient care. This theme was identified in 3 articles
[11,13,15]. Adaji et al. [15] noted that IT has the ability to increase
the quantity and quality of the interactions that patients have with
their healthcare providers. Nobel [13] and Schiotz et al. [11]
observed that the use of various types of IT by the healthcare
provider would allow for more time for patienteprovider in-
teractions as well as for a better quality of care. With such complex
management of diabetes, interaction with and support from
healthcare providers are critical to patients' willingness and ability
to self-manage their diabetes.
 L. Khansa et al. / Technology in Society 44 (2016) 1e9 3

3. Research design Table 1

Patient demographic information.

A series of questions were designed to determine how people Demographics Number of respondents
who have diabetes and their healthcare providers interact using Gender
various technologies while managing their care. The questions Male 12
were examined for sensitivity and edited to remove bias and Female 19
leading verbiage. From these questions an online survey, presented Age
17e29 6
in Appendix A, was developed and placed on 3 online community
30e39 3
discussion boards frequented by people with diabetes.1 Prior to 40e49 3
posting the surveys, we contacted the discussion board moderators 50e59 3
and obtained permission. A new thread was created and the survey >60 7
Undisclosed 9
was linked from the message boards. This yielded 31 study par-
Ethnicity
ticipants. As this is an initial data collecting study, exclusion criteria White 27
were not set. Questions asked the patients about the length of time African American 1
they have had diabetes, life changes they have experienced, how Undisclosed 3
they tracked glucose test results, and improvements that could be Country
USA 9
made to aspects of care that were frustrating for them. We also
UK 20
explored, among other aspects of care, how the patients' healthcare Canada 1
providers reviewed glucose test results and how questions for the Undisclosed 1
physician were handled, including in emergencies. We also asked Type
how appointments for follow-up were managed, both by the pa- 1 20
2 10
tient and the physician, and if other healthcare tools were used to 3c 1
answer questions and seek information. Additionally, we asked the Time since diagnosis
patients how they tracked their medical expenses. As a culminating <1 2
question, we inquired about what would make the patients more 1e5 8
5e10 4
engaged in their care. As the message boards are frequented by
>10 15
patients internationally, the survey yielded interesting results. Undisclosed 2
Study participants were fairly split between male and female
and had a dispersed age range from 17 to over 60. Most study
participants identified themselves as white, with only one person
being African American, and three choosing not to disclose this Regarding tracking their blood glucose results, 39% of respondents
information. Most participants live in the United Kingdom (UK) but do not track the results and 55% use some type of technology to
many respondents were also from the United States (U.S.). Inter- track the results. When asked about the aspects of their diabetes
estingly, a higher percentage of respondents had Type 1 diabetes care that were most aggravating, 29% of respondents cited having
even though Type 2 diabetes is more prevalent. There may be many to test all of the time, and an equal number responded that either
reasons for this uneven participation. Perhaps because the man- healthcare providers didn't seem to care or that, in general, they
agement of Type 1 diabetes is far more complex, patients with Type had misgivings about their advice. The rest of the respondents
1 diabetes may be more dedicated in their self-care or in need of noted other frustrations such as the cost of supplies, lack of edu-
more support. We chose to include people with all types of diabetes cation, and having no cure for the disease.
to get a broader understanding of HIT use in self-management. Considering how the provider manages glucose results, 29%
Regarding the duration of their illness, most participants have stated that their healthcare provider does not collect their glucose
had diabetes for more than 10 years but some have had it for less results. Twenty-two percent responded that their healthcare pro-
than two years and some ranged in between. We also collected vider downloads their glucose tests from their insulin pump or
information about comorbidities and found that only one-third of meter, and another 22% responded that their healthcare provider
respondents have had comorbidities, but no comorbidity was makes them write down their glucose results from their meter.
exceedingly more common than another. The demographics and Nineteen percent responded that their provider collects glucose
background information about the surveyed patients are presented results using a computer. Several respondents cited that they only
in Table 1. go to the doctor so their prescriptions will continue to be filled.
When respondents were asked how they tracked questions for the
4. Survey results: patients' frustrations doctor, several respondents cited more than one method, which
resulted in more than 31 responses. Twenty-three percent do not
Survey results were saved into a spreadsheet and sorted by keep track of questions or do not ask questions of their provider,
question and the responses were clustered into themes. Most re- and twenty-three percent handwrite a list of questions. Twenty-
spondents seemed to have very similar frustrations, regardless of eight percent keep track of questions using some form of tech-
their location or type of diabetes. nology and 25% call the provider's office with questions. When
Forty-five percent of respondents, both Type 1 and Type 2, cited asked how appointments are made, 48% responded that the pro-
diet modifications as the most frustrating part of managing their vider's office schedules their appointments for them without taking
diabetes but other aspects mentioned included depression of hav- their own schedules into consideration. Ten percent responded that
ing a chronic illness, a quotidian need to exercise, frequent testing, the office makes their appointments around their schedules. Forty-
and having the disease from such a young age. Sixty-five percent of two percent make appointments over the phone, 10% make their
respondents test their blood glucose four or more times per day. appointments online, and 3% make appointments by email.
When asked where else they sought healthcare information, all
respondents mentioned the Internet; however, there is a bias to
1
www.diabetes.co.uk/forum/, https://www.diabetesdaily.com/forum/,www. this response as surveys were in an online format. Most sought
diabetesforum.com/. their information using a general Internet search or a diabetes
4 L. Khansa et al. / Technology in Society 44 (2016) 1e9
forum. Several respondents also used alternative medicines and
books for information. As our survey was taken by international
participants, those in the UK with a National Health System care do
not have many health expenses and so were not found to track their
expenses. Only three respondents said that they tracked their
medical expenses for IRS write-off purposes, despite citing that it
did not financially benefit them to do so. All others were not found
to track their expenses.
When asked what would make them more active in their care,
surveyed patients varied in their responses but many felt that they
could not do anything else to be more active in their care. Those
who did feel that something could motivate them to be more active
cited new equipment and technologies to help manage their care,
more interaction with healthcare providers, the ability to view lab
results, and a mentorship program allowing them to create sup-
portive relationships. Details about the survey results and themes
are reported in Table 2.
In examining the results, the major themes that the patients
identified included: (1) frustration with the lack of interaction with
healthcare providers, (2) difficulties in scheduling appointments
(3) the lack of timely communication with healthcare providers, as
well as (4) challenges in managing their diabetes.
4.1. Lack of interaction with healthcare providers
One theme commonly identified was the lack of interaction and
the inability to relate to healthcare providers. Almost half of all
respondents reported that their healthcare providers only
communicated with them during their visits, and that there was a
delay in getting responses from their endocrinologist or other
healthcare providers at other times, with one person citing a 3-
week delay. Several said that they simply felt that their endocri-
nologist did not care. Some respondents cited their inability to
obtain prescription refills from healthcare providers as another
problem. Many stated that there was nothing their endocrinologist
or endocrinology team could do to understand that, without living
with the condition, they could not give proper advice. Many re-
spondents stated that they never saw their endocrinologist, and
that they instead consulted with nurse practitioners, diabetes ed-
ucators, or other unnamed members of the healthcare team. This
was cited as creating a feeling of mistrust. Some said they did not
even feel confident that their endocrinologist reviewed their visit
notes or results. In these cases, it is not the lack of interaction but
rather the quality of the interaction that is to blame. Several people
stated that they would like encouragement instead of admonish-
ment from healthcare providers. One person stated, “I would like to
have a holiday from all that is required [in diabetes management], I
would also like a cheering squad!” Another respondent said that
their healthcare providers were more interested in collecting data
from them, than helping them to find an effective data collection
solution. A lack of interaction and empathy was not a common
theme identified in our literature review; yet, interestingly, it was a
common theme among our respondents.
4.2. Difficulties in scheduling appointments
A resulting problem that a majority of the surveyed patients
have expressed is the difficulty to schedule or modify appoint-
ments. Shockingly, 48% of the respondents stated that they had no
say in the scheduling of the appointment, and that their healthcare
provider only notified them after they had scheduled their
appointment. This likely exacerbates the extent to which the re-
spondents felt that their healthcare provider did not care. If an
appointment needs to be rescheduled, 13% cited difficulty in
rescheduling and rescheduling delays ranging from 1 to 6 months.
Despite this, almost half of all respondents cited no problem
making appointments so this seemed to be a very split concern-
each healthcare provider either had a problem scheduling or did
not. Scheduling issues were more common among the respondents
from the U.S. One respondent stated, “Scheduling appointments is a
nightmare! I have to keep track to make sure I don't get behind.”
Regarding appointment tracking, respondents had various ways
of remembering appointment times. Thirteen respondents did not
state how they kept track of appointments, but, of those who did,
most kept reminders on their smartphone or on a paper calendar at
home. Several respondents said that their healthcare provider
reminded them through either email, text message, or a phone call.
A few respondents did state that they had difficulty keeping track of
their appointments and the methods used did not appear to work
consistently.
4.3. Lack of timely communication with healthcare providers
When checking-in, patients are often asked to update their in-
surance information or acknowledge that they have received new
privacy notices. Patients with diabetes undergo lab work during
each visit to monitor their blood glucose and thyroid levels. Lab
results would generally be discussed with their endocrinologists
during the following visit. Should there be any concerns or results
that required more immediate attention, the healthcare provider
should contact the patient to review the results and discuss the
matter further. Several patients mentioned that they would prefer
to have access to the results beforehand so they could review them
ahead of the appointment and ask any questions they might have
about the results. Some surveyed patients felt that having access to
this information was an important factor in helping them take
control of their health. While they might not be able to interpret the
results as accurately as their endocrinologist, patients expressed
that having access to their lab results and the range benchmarks
made them aware of the changes they needed to make in their daily
lives, without having to wait until the following appointment. One
person noted that “Getting copies of test results would be an
incentive [to make changes]!”.
Twenty-three percent of respondents noted that for one reason
or another they did not ask questions of their healthcare providers.
Some noted mistrust and others simply chose to search the Internet
for the answers to their questions. Twenty-three percent of re-
spondents noted that they wrote questions down on a piece of
paper and asked them during their upcoming visit; however,
should these questions be of a more urgent nature, the patients had
to call their healthcare provider to address their concerns. One
issue the patients had experienced related to forgetting to ask the
doctor important questions during their appointment. Most chose
to subsequently seek answers on the Internet, although this result
may be skewed since this was an Internet survey. If the patients
were able to record their questions in the system directly, as soon as
they were identified, they would have been able to discuss them
with their healthcare providers more efficiently during their
scheduled appointments or perhaps use a system better suited to
real-time answers.
4.4. Challenges in managing the complex care of diabetes
All patients cited various challenges specific to managing their
diabetes. These include having to regularly test their blood glucose
and perhaps the inconvenience of having to wear a cumbersome
insulin pump that is difficult to hide under clothing, and almost
impossible to wear with garments without pockets. Forgetting or
neglecting to monitor blood glucose levels could result in life-
threatening ketoacidosis in people with Type 1 diabetes or, at the
 L. Khansa et al. / Technology in Society 44 (2016) 1e9 5

Table 2
Survey responses.

Number of responses

What aspects of your life have changed the most since your diagnosis?
Having to monitor and change diet 14
Depression or psychological damage 5
Modification of daily exercise 4
Having to constantly test blood glucose 2
Too young to remember 2
How often do you test your glucose?
Do not test 4
1e3 times a day 7
4e6 times a day 10
Greater than 6 times a day 10
How do you track your test results?
Do not track results 12
Smartphone app 1
Insulin pump 3
Blood glucose test meter 5
Computer 8
Hand written log 2
What part of your diabetes care is the most aggravating?
Feeling that healthcare staff does not care 9
Cost of supplies 3
Having to modify diet 4
Lack of available/access to education 3
The fact that there is no cure 3
Having to test all the time 9
How does your doctor review your glucose results? How does your doctor take notes during your visit? How is paperwork
handled at your doctor's office?
The Doctor does not care 9
Download from pump or meter 7
Handwritten notes 7
Notes are made on the computer 6
Question not answered 2
How do you keep track of questions that you need to ask your doctor? What do you do if those questions are urgent in
nature?
Phone in questions 10
Handwritten list that they bring to appointment 10
Do not ask questions of the Doctor because they do not care 9
Email 6
Keep questions at notes on smart phone 4
How do you make appointments to see your doctor?
Office schedules appointment 18
Call in to make appointment 13
Online 3
Email 1
How do you remember appointments?
Text reminder 2
Call reminder 7
Email reminder 2
Online system 2
Calendar 5
Question not answered 13
What sources of health information or tools, other than your doctor, have you used?
Internet (Surveys were solicited from diabetes forums) 31
How do you keep track of your medical expenses? What do your medical expenses include?a
Track for IRS write-off 3
a
Note: For the majority of respondents their insurance (U.S.) or Nationalized Health Service (UK/Canada) covers costs.

very least, could make patients experience symptoms of general
malaise and weakness. On the other hand, injecting too much in-
sulin if the patient forgets they have already had an insulin dose can
cause hypoglycemia, which could also be fatal. Medication re-
minders are therefore critical for patients with diabetes. We also
noticed in our results that there is an internal motivation that is
either driving patients to care for their disease or, if lacking, is
preventing them from caring for themselves. It seems that many of
the respondents felt that if they had additional support it would
have better assisted them in managing their condition. One
respondent noted that “Many people that I know don't know I have
diabetes and I spend a lot of time trying to hide my disease.”
In summary, the surveyed patients acknowledged the impor-
tance of keeping daily blood glucose and lifestyle (nutrition,
exercise, etc.) records, and over half noted that they considered
themselves active in their care and that they managed their care
well despite the challenges. Two respondents noted that they
would like a respite from their disease and several others made
comments acknowledging the difficulties in continuous manage-
ment. Some cited lack of motivation and lack of education about
methods of improving self-management as the biggest barriers to
improving self-care. In addition, several respondents expressed a
desire to have access to their providers' electronic medical record
systems, and their lab results and healthcare providers' notes to
review them prior to and in between their appointments.
Having thoroughly evaluated the patients' point of view, we
present a set of recommendations on how HIT can help patients in
better managing their health and taking a more active role in their
6 L. Khansa et al. / Technology in Society 44 (2016) 1e9
health management, consequently reducing their daily frustrations.
5. Recommendations
5.1. Centralized real-time access
In general, patient prescriptions are authorized by their current
providers through electronic prescribing using a tablet PC. In the
event that patients are referred to alternate healthcare networks, or
are seen for urgent care, the patients' medical records should be
readily available and accessible by all of the patients' healthcare
providers, and ought to be automatically updated during each of
their medical visits. This could be achieved through a nationwide
EHR system that is accessible by all healthcare providers. Giving
healthcare providers access to an EHR system where the prescrip-
tion information is linked to their patients' profiles can warn them
about potential drug interactions. One respondent noted that when
they had to seek another healthcare provider who did not know
about their diabetes, they were mistakenly prescribed medications
that are contraindicated in people with diabetes. Alternatively, the
chart records from the visit could also be sent electronically to the
patient's primary care provider indicating the diagnosis, course of
treatment, prescriptions, and follow-up points. Either way, this
alleviates patients from having to bring the prescriptions with
them during the following visit. A nationwide EHR system ulti-
mately benefits patients by providing critical and timely insight
into their overall health conditions.
5.2. Timely electronic access to expected and completed lab work
If each healthcare provider adopted an online reservation sys-
tem, it would be possible to integrate notices for appointment
confirmation and reminders, information and reminders about
prescriptions, as well as upcoming lab tests and lab results, and
either email them or make them electronically available to the
patient. This recommendation would not only prepare the patient
for the visit, but it will also make the experience more efficient for
both parties.
Some respondents expressed a desire to see their lab results
before their following appointment. Quest Diagnostics has recently
launched a system called MyQuest giving patients with diabetes
direct access to their lab results via a mobile application, available
on Blackberry, iPhone, and Android mobile platforms. It also allows
patients to manage their personal health information, such as
medical history and prescriptions [17]. The Department of Health
and Humans Services (HHS) stated that patients are likely to ask
better questions if they have access to their lab results [18]. In the
event that abnormal lab results are mistakenly overlooked by busy
medical personnel, having the patients check their own lab results
may lead to fewer mistakes, while also making them feel more in
control of their healthcare and life goals.
5.3. Online scheduling system
Some of the surveyed patients indicated that it would be more
convenient for them to schedule their appointments using an on-
line reservation system that allows them to view a calendar and
select the preferred appointment dates and times that fit their
schedules. Some also cited this as being available although some
still chose not to use it, preferring whatever method they have used
in the past. Once the patients' preferences have been submitted to
the system, the healthcare provider's office could respond with the
approved appointment time and confirmation that an appointment
has been scheduled.
ZocDoc [19] is an example of such a reservation system that
allows a patient to search for healthcare providers in a given area
and complete an appointment reservation request. The healthcare
provider's office then sends electronic notification back to the user,
confirming the appointment. This technology allows the user to
schedule an appointment with a healthcare provider without
having to spend time waiting on the phone for assistance. Facili-
tating appointment scheduling online also allows the front office
personnel to more efficiently schedule appointments and devote
more time to serving patients in the office, instead of having to
repeatedly assist other patients on the phone. It also might enhance
the patient's ability to find an appointment sooner than might
otherwise be found for them and perhaps even allow the patient to
change their appointment when there are cancelations.
5.4. Tools to better manage diabetes
5.4.1. Glucose monitoring and medication reminders
It is critical that patients with diabetes not forget to test their
blood glucose and take their medications, especially insulin. An
alert application that reminds patients of their medications and to
test their blood glucose would help to support patients and alle-
viate burdens of memory lapses. Glucose Buddy is an example of an
application that patients with diabetes can use to track their blood
glucose levels, insulin injections, food consumption, and physical
activity [20]. This application is available for free online and on
most smart phones and tablets. Since the patient can print or email
logs from this application, it could replace the need for manually
filling out the written log sheets at appointments. An application
with the added ability to interface with a primary care provider's
EHR system would best improve the patient-to-provider commu-
nication. The technology also exists for a blood glucose monitor
that is designed to work with smart phones and other mobile de-
vices. This device works with an accompanying application that
would track blood glucose results and keep other records for pa-
tients with diabetes [20].
5.4.2. Insulin pump
The survey respondents who use an insulin pump mostly had
very positive comments about it as a tool for effective diabetes
management. Although not a new technology, it has been greatly
improved since its inception [21]. The respondents noted that it
would be convenient if the pump provided reminders, through a
series of beeps, to alert them when the insulin reservoir was
running low and when they needed to manually check their blood
glucose levels. This is also something that many pumps on the
market can do if programmed to do so, which may indicate that
education is lacking during initial training when the patient begins
to use an insulin pump. Most respondents who use an insulin pump
cited decreased diet restrictions as the pump's biggest benefit.
Several other respondents indicated that their healthcare providers
download the results from their pump to examine the graphs and
look for trends to improve treatment. Several respondents with
insulin pumps had healthcare providers who still wrote down re-
sults instead of downloading them. Effectively using the pump and
its technological features will likely improve patient care and
improve the trust relationship between patients and their health-
care providers. Drawbacks that were cited to having an insulin
pump are the frequent cannula changes (it is changed every 2e3
days), the cost of the pump, and the ongoing cost of supplies. Some
patients also mentioned that the pump's size and the need to wear
it continuously were cumbersome but worthwhile to gain
increased control over their blood glucose and diet.
Some patients expressed an interest to get an implanted insulin
pump that works like a pacemaker. Such an implant would virtually
eliminate the need for insulin injections or for insulin pumps all
 L. Khansa et al. / Technology in Society 44 (2016) 1e9
together. There is a product on the market, known as the
“implantable insulin pump”, manufactured by Medtronic, which
delivers insulin subcutaneously [22]. This device is about the size of
a hockey puck, is implanted into the body, and requires bi-annual
check-ups to ensure that it continues to work as planned. Patients
must also have the pump refilled at the healthcare provider's office
four times a year, which could coincide with their regular checkup
appointments. The “implantable insulin pump” allows a patient
with diabetes to lead a healthy life without the inconvenience of
the insulin pump or daily insulin injections [23].
Unfortunately, this device, which has been on the market in
some countries since the 1980s, is not approved by the Federal Drug
Administration (FDA) and therefore is not approved for use within
the U.S., although, ironically, the pump is manufactured in the U.S.
To receive the “implantable insulin pump”, patients must travel to
European countries, such as France, Sweden, or Belgium, to have
the pump implanted and travel back and forth, at their own
expense, at least twice a year to verify that their pump is working
effectively and four times a year for a refill of insulin. Because of
these restrictions, it would be unlikely that most patients in the U.S.
would be able to gain access to this technology [23].
5.4.3. Text messaging from members of the healthcare team
Management of diabetes is complex and does not give patients
with diabetes the ability to take a day off from caring for their
disease. Since management is continuous and demanding, patients
often tire of caring for it. Several of the respondents in our survey
expressed the desire for more motivation and support from their
healthcare team. Dobson et al. [24] utilized a text messaging system
for checking in on adults with poorly controlled diabetes, and found
it to be a potentially useful method for encouraging patients and
improving glycemic control. Additionally, the messages were
tailored to patients' preferences and treatment plan. It was a small
pilot study, but subsequent larger scale implementation of this text
messaging mechanism could be useful to support all patients with
diabetes.
5.4.4. Intelligent and interactive EHR system
Patients with Type 1 diabetes need to regularly monitor their
blood glucose levels and determine if more insulin or more car-
bohydrates are needed at any given time. Consuming the right kind
and the right quantity of food, and performing the right activity
level and balancing this with medication or insulin intake are
crucial to the life of a patient with Type 1 diabetes. CareLink Per-
sonal Software is a web-based technology that is compatible with
Medtronic insulin pumps, continuous glucose monitors, and gluc-
ometers that provides patients with diabetes with up to the minute
readings on their blood glucose levels, allowing for rapid changes in
insulin dosages as needed. This software can also help identify
patterns and the causes for spikes or drops in blood glucose levels.
This information can then be used to make long term lifestyle
changes to reduce the frequency of these highs and lows [22]. If a
software product, such as CareLink Personal Software, is embedded
within an EHR system, then all concerned parties, including
healthcare providers and insurance companies, can access real-
time information as needed. The importance of an EHR system
for patients with diabetes cannot be overestimated. Ideally, this
diabetic-friendly EHR system would receive real-time information
about the patients' blood glucose levels, and would recommend
particular types of diet and exercise accordingly.
7
6. Key barriers and possible solutions
6.1. Lack of standards
Establishing a nationwide EHR system would allow seamless
exchanging of information across disparate systems, such as hos-
pitals, clinics, nursing homes, etc. Even within the same healthcare
organization, there are numerous systems that interact and ex-
change data. Ensuring interoperability of these systems is critical
for operational efficiency and, in turn, for patient safety. To
accomplish successful system integration, there needs to be health
data standards. For example, when a patient is urgently admitted to
the emergency room, a healthcare provider should be able to
quickly retrieve the patient's up-to-date chart at the point of care,
submit diagnostic tests and lab orders, if needed, and have the
results, when available, seamlessly uploaded to the patient's
records.
Health information exchange is even more complicated when
information is being moved across disparate organizations such as
when an individual starts a new job at a different city and needs to
transfer all of his or her medical information to a new healthcare
system. When healthcare information is moved between different
systems, there needs to be a standard representation for the same
type of information. For example, a patient's age should not be
stored in two different ways on two different systems (e.g. as date
of birth vs. age) because when information about the patient's age
is exchanged it has to take on the same standard form. With
thousands of fields of healthcare data being exchanged at every
healthcare provider's request, it becomes clear how the lack of
interoperability quickly becomes a problem that can grow out of
proportion.
There are three types of health information exchange standards:
(1) vocabulary standards, (2) content exchange standards, and (3)
privacy/security standards [25]. Vocabulary standards ensure that
clinical problems, clinical procedures, medications, and allergies
are expressed using standardized nomenclatures. For example,
instead of expressing diabetes using different terminologies (e.g.,
diabetic, diabetes, etc.), the healthcare industry can use an agreed
upon code or a number that represents diabetes. Content exchange
standards, on the other hand, are used during the exchange of
clinical summaries and prescriptions. Finally, privacy and security
standards ensure the confidentiality, integrity, and availability of
private patient information using, among others, authorization,
authentication, and access control policies and technologies [26].
The establishment of a nationwide EHR system would benefit
patients with diabetes specifically as it would allow them to see
multiple providers and even a different healthcare provider for
diabetes without concern of losing past medical information. This
would allow healthcare providers who are totally separate to pro-
vide more congruent care. This would also decrease the possibility
of medical errors, such as prescribing the same medications more
than once, or prescribing medications that are contraindicated to
be used together. A nationwide EHR system might also allow the
patient to feel more valued because providers would already know
pertinent information about them and can consequently treat them
more personably [27].
6.2. Costs
One of the main challenges hindering the successful adoption of
HIT remains cost. While great strides have been made to ensure
health insurance coverage of diabetes supplies and services, most
insurance plans still do not cover needed education programs or
electronic devices that are intended to help patients better collect
and communicate blood glucose test results to their healthcare
8 L. Khansa et al. / Technology in Society 44 (2016) 1e9
providers [28]. Cost of implementation is also still a major barrier
for most healthcare providers who wish to establish an electronic
medical record system. The required staff training and hardware
and software requirements are substantial upfront expenses for an
individual healthcare practice. The U.S. federal government has
assisted healthcare providers in overcoming the EHR system cost
barriers by providing financial incentives to implement and use
healthcare information systems. Widespread adoption of HIT ca-
pabilities for diabetes care would occur at a faster rate with similar
federal or state subsidies. Government and healthcare company
incentives could also help many patients obtain electronic devices
and other technologies that enhance their self-care. In addition to
financial motivation, individual patients need to insist that their
healthcare providers utilize the electronic communication capa-
bilities that they need to better manage their disease [27]. Not only
are these promising systems and capabilities expensive to adopt
and upgrade, but they also increase perceived concerns over the
security of transmitting electronic data outside of a single practice
[27].
6.3. Security and privacy concerns
Before electronic health records take total prominence in our
healthcare landscape, patients need to be given the assurance that
their private information is kept secure and that standards and
regulations have been put in place to safeguard their privacy. One
such very important healthcare regulation is the Health Insurance
Portability and Accountability Act (HIPAA) passed by Congress in
1996. HIPAA's goal is to ensure that all medical records are pro-
tected from information mishandling and misuse to safeguard the
privacy of patients [29]. HIPAA also requires that all patients be
given access to their own medical records and be informed on how
their personal information is being shared or used [29,30].
To offer patients access to their medical information anytime
and anywhere, Khansa et al. [31] proposed a cloud-based EHR
system that uses the cloud as a central repository, thus allowing
critical medical information to be instantly accessible, easily
transferable, and consistent. The main challenge with a cloud-
based EHR system remains information security. However, it has
been shown that information security on the cloud is often much
better than that of most Fortune 500 companies and government
agencies [32e34] as the size of the cloud infrastructures makes it
harder for hackers to correctly identify what server hosts which
application or customer (patient) data. Another challenge with
hosting private patient information on the cloud is data ownership.
There needs to be clear guidelines as to who owns the medical
information and who is responsible to safeguard patient privacy
[26,29,31].
7. Conclusions, limitations, & future research directions
In this paper, we surveyed patients who have been diagnosed
with diabetes and analyzed their responses about their experiences
and frustrations. We then presented recommendations on how HIT
could help address the identified frustrations and improve the
patients' quality of life. Our results suggest that patients' frustra-
tions mainly emanate from a lack of interaction with healthcare
providers and a lack of education and support about how to
manage their diabetes. For the most part, respondents wanted a
healthcare provider to listen, that they trust for advice, and
someone that is responsive and caring. They also wanted increased
responses to questions and an easier method for making and
rescheduling appointments. The results of the surveys are some-
what surprising in that they contradict popular perception that the
older a population the less likely they are to adopt new
technologies [35]. Contrary to these misconceptions, the re-
spondents, regardless of their age, appeared eager to experiment
with HIT as long as it helped them manage their diabetes. In fact,
recent studies have shown that the attitudes of baby boomers, born
between 1946 and 1964, towards technology are different from
those of previous generations. Gallelli [[36], p. 2], for example,
found that about 56% of boomers “indicate a high willingness to use
inehome health monitoring devices in tandem with the care of
their primary physician.” Rogers [[37], p. 9] also found that baby
boomers are “98% more likely to visit health Web sites than the
average Internet user.”
A recurring theme in this paper is that if patients have the ability
to stay informed about their own personal health information, they
are more likely to be motivated and empowered to take charge of
their own health. This will cause patients to increase their focus on
preventative health measures and making more informed choices
that will result in improving the overall quality of healthcare. A
more involved patient is more likely to ask better questions and
make better health-related choices than someone taking a more
passive approach. This is particularly important for patients with
diabetes because monitoring and control is a crucial part of their
treatment. Another common theme observed in the survey analysis
related to the difficulty in scheduling appointments. The use of an
online scheduling system, perhaps with an additional communi-
cation tool would assist with both the scheduling aspect and with
the interaction and communication with healthcare providers.
Besides these two themes, we believe that regularly ensuring
awareness of patients, healthcare providers, and policy makers
about new programs, technologies, and research findings is crucial
to ensure that they are all on the aware of the technologies available
for disease treatment. Timely dissemination of relevant healthcare
information ensures that the recommendations that we proposed
in this paper for patients with diabetes are relevant and constantly
improved. Further, healthcare providers need to be more proactive
in selecting the right tools to better care for their patients.
Although a “cure” has not been developed for diabetes, it has
been proven that the best method for preventing disease progres-
sion is through well-managed self-care. In order to best execute
self-care, patients must be provided with the tools to better
communicate with their healthcare providers. A nationwide EHR
system has the potential to reduce healthcare errors, inefficiencies,
and unnecessary costs, thus allowing for better quality of care.
Equally important, it can ensure better communication between
patients and their healthcare providers, in turn facilitating patient
interaction with their healthcare providers and higher involvement
in their own healthcare. It is also crucial that healthcare providers
select an EHR system that is best suited to the individual needs of
the patient with diabetes [38]. That system must be able to collect
and analyze patient information, and should also communicate
information to patients and their providers. An ideal EHR system
for diabetes care would include patient history, medication list,
laboratory results, a directory of other providers whom the patients
have previously consulted, and some information about how the
patient manages their disease to allow for individualization of
treatment. EHR systems for diabetes care should also have the
capability to interface with the Public Health Record application
used by patients for their self-care.
Our study had some limitations related to its research design. By
administering the survey online, we targeted a group of people who
are most likely IT-savvy. However, nowadays, people are for the
most part technology-savvy and most have Internet access, so we
do not expect this limitation to considerably affect our findings.
Another limitation related to amalgamating our study patients with
3 different types of diabetes that are managed very differently.
Interestingly, this allowed us to identify surprising commonalities
 L. Khansa et al. / Technology in Society 44 (2016) 1e9
between the 3 types of diabetes. In future research, we could repeat
the study with patients with the same type of diabetes, and ask
them more specific questions about their diabetes type, which
would garner more specific results.
Appendix A. Survey questions
1. Please indicate your age, gender (Male/Female), ethnicity,
Type 1, Type 2, or other diabetes. How long have you had
diabetes and do you have other chronic health conditions?
2. What aspects of your life have changed the most since your
diagnosis?
3. How often do you test your glucose?
4. How do you track your test results?
5. What part of your diabetes care is the most aggravating?
6. How does your doctor review your glucose results? How
does your doctor take notes during your visit? How is
paperwork handled at your doctor's office?
7. How do you keep track of questions that you need to ask your
doctor? What do you do if those questions are urgent in
nature?
8. How do you make appointments to see your doctor?
9. How do you remember appointments?
10. What sources of health information or tools, other than your
doctor, have you used?
11. How do you keep track of your medical expenses? What do
your medical expenses include?
12. Culminating question: What would make you want to
become more active in your healthcare?
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