VOLUME 10 NUMBER 4 • NOVEMBER 2013
123
SA JOURNAL OF DIABETES & VASCULAR DISEASE
REVIEW
modern healthcare, although in most centres they still compliment
rather that replace traditional paper based records. Electronic
diabetes registries in the context of good managed clinical networks
have the potential to dramatically improve care
23,24
but are rarely used
to capacity. Clinical Management Systems are particularly useful for
chronic disease management where multiple care providers are
involved. A good exemplar is SCI-Diabetes, a shared electronic record
for diabetes care developed by NHS Scotland and the University of
Dundee
24,25
(see Fig. 1). SCI-Diabetes (previously SCI-DC) facilitates
the collection of data frommultiple sources within primary, secondary
and tertiary care into one fully consolidated, patient-focused view.
The system covers the entire national population of diabetes patients,
meaning that data can be viewed by all authorised users at the point
of care, therefore avoiding any duplication of effort.
Secondary data use
Electronic systems may also capture vast volumes of data, suitable
for record linkage and exploitation to improve service, enhance
the clinical evidence base and to provide benchmarks.
12,25,26
Clinical
research networks throughout the world
26,27
now support the use of
clinical data in epidemiological research and clinical trials.
28,29
Secure
linkage and anonymisation of data from relevant datasets is required
prior to analysis in order to maintain information governance
standards. This process does not detract from the quality of the
data being analysed, but ensures that the identities of those whose
records contribute are protected.
Diabetes self care: a digital approach
Patient record access
A 2007 Nuffield Trust report
30
on Electronic Personal Health
Records (ePHR’s) stated that:
“ePHRs have the potential to improve
communication between providers and patients by sharing
information, to enhance the quality of records by highlighting
inaccuracies, and to reduce the burden of care by engaging patients
in managing their own health and illness”
In theUS, Kaiser Permanente’s
MyHealthManager
31
isoneof largest
and most advanced patient access systems. It has reported significant
decreases in primary care office visits and telephone contacts.
32
Whilst useful, it has been highlighted that the implementation of the
necessary technology is
“highly context dependent and research …
is essential to inform strategic decision making”
.
17
Patient access to personal health records has the potential to
improve self care and influence clinical decision making. Patients
may better understand their clinical conditions and be motivated
to ask appropriate questions during consultations. Online pre-clinic
assessments can be used to allow the consultation to proceed more
efficiently.
In the UK, there are a limited number of online systems that
allow patient access to clinical records, with various levels of
success. EMIS Access
33
and Renal PatientView
34,35
allow access to a
subset of clinical data from primary and secondary care respectively.
They have both reported a reduction in administration overheads,
and an improvement in appointment attendance as a result of
records access. EMIS Access offers appointment booking and repeat
medication ordering capabilities, to extend the user experience and
the convenience available. Renal Patient View’s evaluation of its
uptake also reported benefits including improved understanding of
kidney health, enhanced ability to self care and improved patient–
professional communication.
My Diabetes My Way
36
(Fig. 2) is an example of a diabetes-
focused shared personal record, functioning in NHS Scotland.
Patients have online access to the most relevant data fields within
the main database, which is linked to an extensive education
resource website. Whilst still in its infancy, user feedback has been
positive. Patient quote: “it is an essential component to aid self-
management”.
Mobile apps
Patient self care can be supported further by the use of mobile
phone software applications or ‘apps’. There are a huge number
of smart phone apps available (many free) to diabetes patients
(see Fig. 3) across all service provider markets. They have various
features including; blood glucose recorders (with trend analysis),
medications recorders with reminder alerts, activity and exercise
monitors, calorie counters, recipe finders, and carbohydrate/insulin
calculators. Some have links to wider diabetes communities for
peer support.
There are a number of apps specifically supporting nutritional
aspects of diabetes including Carbs and Cals (for carbohydrate
Figure 1.
SCI-DC (National Diabetes Registry for NHS Scotland); a screen shot
from an electronic clinical care record with fictitious patient data.
Figure 2.
My Diabetes My Way: A personal health record for diabetes care (ano-
nymised data shown).
