Cardiovascular Journal of Africa: Vol 26 No 6 (November/December 2015)

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CARDIOVASCULAR JOURNAL OF AFRICA • Volume 26, No 6, November/December 2015 AFRICA 227
An open-access mobile compatible electronic patient
register for rheumatic heart disease (‘eRegister’) based
on the World Heart Federation’s framework for patient
registers
Joris van Dam, John Musuku, Liesl J Zühlke, Mark E Engel, Nick Nestle, Brigitta Tadmor,
Jonathan Spector, Bongani M Mayosi
Abstract
Background: Rheumatic heart disease (RHD) remains a major
disease burden in low-resource settings globally. Patient regis-
ters have long been recognised to be an essential instrument
in RHD control and elimination programmes, yet to date rely
heavily on paper-based data collection and non-networked
data-management systems, which limit their functionality.
Objectives: To assess the feasibility and potential benefits of
producing an electronic RHD patient register.
Methods: We developed an eRegister based on the World
Heart Federation’s framework for RHD patient registers
using CommCare, an open-source, cloud-based software for
health programmes that supports the development of custom-
ised data capture using mobile devices.
Results: The resulting eRegistry application allows for simul-
taneous data collection and entry by field workers using
mobile devices, and by providers using computer terminals
in clinics and hospitals. Data are extracted from CommCare
and are securely uploaded into a cloud-based database that
matches the criteria established by the WHF framework. The
application can easily be tailored to local needs by modify-
ing existing variables or adding new ones. Compared with
traditional paper-based data-collection systems, the eRegister
reduces the risk of data error, synchronises in real-time,
improves clinical operations and supports management of
field team operations.
Conclusions: The user-friendly eRegister is a low-cost, mobile,
compatible platform for RHD treatment and prevention
programmes based on materials sanctioned by the World
Heart Federation. Readily adaptable to local needs, this
paperless RHD patient register program presents many prac-
tical benefits.
Keywords: rheumatic heart disease, registries, mobile health,
open-source model
Submitted 21/11/14, accepted 10/6/15
Published online 6/10/15
Cardiovasc J Afr 2015; 26: 227–233
DOI: 10.5830/CVJA-2015-058
Rheumatic heart disease (RHD) was largely eliminated from
most high-income countries decades ago but it remains a
major cause of cardiovascular disease in sub-Saharan Africa,
indigenous Australia, south-central Asia, the Pacific region,
and other low-resource settings globally.1,2 At least 15 to 20
million people are affected and more than 280 000 new cases
are diagnosed each year,3 although recent data from population-
based screening using echocardiography suggest that the true
prevalence could be up to tenfold higher. 4–6
The World Heart Federation (WHF), an association of
worldwide heart foundations and medical societies, is the leading
international non-governmental organisation concerned with
cardiovascular disease prevention.7 A key strategic target put
forth by WHF is the use of comprehensive register-based
control programmes in regions where RHD is endemic.7 Patient
registers are instrumental in helping to organise the medical
care of patients with RHD, minimising the loss to follow up,
and maximising the likelihood of compliance with therapeutic
regimens.7-11 This is particularly important in patients with RHD,
many of whom require regular antibiotic therapy for decades in
order to mitigate the progression of heart disease.
Registers also facilitate monitoring of longitudinal patient
outcomes, and can be used to compile epidemiological data
for use in programme planning and advocacy activities.7,11,12
Furthermore, patient registers can be used to collect, organise
and report data required by national health authorities should
RHD be considered a reportable disease. Examples such as the
Novartis Institutes for BioMedical Research, Cambridge,
Massachusetts, USA
Joris van Dam, PhD,
Brigitta Tadmor, PhD
Jonathan Spector, MD, MPH
Department of Paediatrics & Child Health, University
Teaching Hospital, Lusaka, Zambia
John Musuku, BSc HB, MBcHB, MMed
Western Cape Paediatric Cardiac Services, Red Cross War
Memorial Children’s Hospital, University of Cape Town,
Cape Town, South Africa
Liesl J Zühlke, MB ChB, DCH, FCPaeds (SA), Cert Cardiology
(Paeds), MPH, FESC
Department of Medicine, Groote Schuur Hospital and
University of Cape Town, Cape Town, South Africa
Liesl J Zühlke, MB ChB, DCH, FCPaeds (SA), Cert Cardiology
(Paeds), MPH, FESC
Mark E Engel, BSc (Med) Hons, MPH, PhD
Bongani M Mayosi, BMedSci, MB ChB, DPhil, FCP (SA), FESC
Dimagi Inc, South Africa
Nick Nestle, BSEE