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The Process of Installing REDCap, a Web Based Database Supporting Biomedical Research: The First Year

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Background: Clinical and research data are essential for patient care, research and healthcare system planning. REDCapTM is a web-based tool for research data curatorship developed at Vanderbilt University in Nashville, USA. The Faculty of Health Sciences at the University of the Witwater- srand, Johannesburg South Africa identified the need for a cost effective data management instru- ment. REDCap was installed as per the user agreement with Vanderbilt University in August 2012. Objectives: In order to assist other institutions that may lack the in-house Information Technology capacity, this paper describes the installation and support of REDCap and incorporates an analysis of user uptake over the first year of use. Methods: We reviewed the staffing requirements, costs of installation, process of installation and necessary infrastructure and end-user requests following the introduction of REDCap at Wits. The University Legal Office and Human Research Ethics Committee were consulted regarding the RED- Cap end-user agreement. Bi-monthly user meetings resulted in a training workshop in August 2013. We compared our REDCap software user numbers and records before and after the first training workshop. Results: Human resources were recruited from existing staff. Installation costs were limited to servers and security certificates. The total costs to provide a functional REDCap platform was less than $9000. Eighty-one (81) users were registered in the first year. After the first training workshop the user numbers increased by 59 in one month and the total number of active users to 140 by the end of August 2013. Custom software applications for REDCap were created by collaboration be- tween clinicians and software developers. Conclusion: REDCap was installed and maintained at limited cost. A small number of people with defined skills can support multiple REDCap users in two to four hours a week. End user training increased in the number of users, number of projects created and the number of projects moved to production.
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The Process of Installing REDCap,
a Web Based Database Supporting
Biomedical Research
The First Year
M. Klipin1; I. Mare2; S. Hazelhurst3; B. Kramer4
1 Department of Surgery, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, Republic of South Africa;
2 Department of Radiation Oncology, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, Republic of
South Africa;
3 School of Electrical and Information Engineering, University of the Witwatersrand, Johannesburg, Republic of South Africa;
4 Health Sciences Research Office, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, Republic of South
Africa;
Keywords
Database management systems, medical informatics, electronic data capture, clinical research,
translational research
Summary
Background: Clinical and research data are essential for patient care, research and healthcare sys-
tem planning. REDCapTM is a web-based tool for research data curatorship developed at Vander-
bilt University in Nashville, USA. The Faculty of Health Sciences at the University of the Witwater-
srand, Johannesburg South Africa identified the need for a cost effective data management instru-
ment. REDCap was installed as per the user agreement with Vanderbilt University in August 2012.
Objectives: In order to assist other institutions that may lack the in-house Information Technology
capacity, this paper describes the installation and support of REDCap and incorporates an analysis
of user uptake over the first year of use.
Methods: We reviewed the staffing requirements, costs of installation, process of installation and
necessary infrastructure and end-user requests following the introduction of REDCap at Wits. The
University Legal Office and Human Research Ethics Committee were consulted regarding the RED-
Cap end-user agreement. Bi-monthly user meetings resulted in a training workshop in August
2013. We compared our REDCap software user numbers and records before and after the first train-
ing workshop.
Results: Human resources were recruited from existing staff. Installation costs were limited to
servers and security certificates. The total costs to provide a functional REDCap platform was less
than $9000. Eighty-one (81) users were registered in the first year. After the first training workshop
the user numbers increased by 59 in one month and the total number of active users to 140 by the
end of August 2013. Custom software applications for REDCap were created by collaboration be-
tween clinicians and software developers.
Conclusion: REDCap was installed and maintained at limited cost. A small number of people with
defined skills can support multiple REDCap users in two to four hours a week. End user training in-
creased in the number of users, number of projects created and the number of projects moved to
production.
Case Report
M. Klipin et al.: Installing a Web Based Database Supporting Biomedical Research
For personal or educational use only. No other uses without permission. All rights reserved.
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Correspondence to:
Dr M. Klipin
Department of Surgery
School of Clinical Medicine
Faculty of Health Sciences
University of the Witwatersrand
7 York Street, Parktown, 2193
Johannesburg, South Africa
Phone:+27-(0)11–717–2080
Fax: +27-(0)11–488–2717
Email:michael.klipin@wits.ac.za
Appl Clin Inform 2014; 5: 916–929
http://dx.doi.org/10.4338/ACI-2014-06-CR-0054
received: June 16, 2014
accepted: October 26, 2014
published: November 19, 2014
Citation: Klipin M, Mare I, Hazelhurst S, Kramer B. The
process of installing REDCap, a web based database
supporting biomedical research – the first year. Appl
Clin Inf 2014; 5: 916–929
http://dx.doi.org/10.4338/ACI-2014-06-CR-0054
Case Report
M. Klipin et al.: Installing a Web Based Database Supporting Biomedical Research
For personal or educational use only. No other uses without permission. All rights reserved.
Downloaded from www.aci-journal.org on 2014-12-01 | IP: 146.141.1.81
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© Schattauer 2014
1. Background
South Africa is a middle-income country with an escalating quadruple burden of diseases. Namely,
poverty related diseases, non-communicable diseases, communicable diseases and violence related
diseases [1]. Clinical and research data acquisition, storage and management are essential for patient
care, basic and translational research and healthcare strategy and planning. At the University of the
Witwatersrand (Wits), Johannesburg Faculty of Health Sciences, clinical practice and research is
spread over three geographically separate academic teaching platforms. These academic platforms
service approximately 5200 inpatient beds. Each platform has varying policies and practices for data
capture and management. In addition, large amounts of data are collected at rural research sites,
which are often distant from the institutional complex. The University does not currently have a
universal policy regarding data curatorship.
The staff complement in the Faculty of Health Sciences includes well over 2500 academics, com-
prising both non-clinical and clinical staff. In this group are included over 700 residents in training
to be specialists and who are required to carry out research as part of their training [2]. The aca-
demic staff is spread throughout the Johannesburg metropolitan area and to rural hospitals in other
provinces of South Africa. This geographic distribution of staff and services affects data capture,
data access, and ultimately patient care. Consequently the relevant research to guide treatment, in-
form management and plan strategic policy is limited.
The Faculty of Health Sciences is constrained in providing a data acquisition and curatorship in-
strument by limited funds and a paucity of specialist information technology skills.
Unti l rec ently, res earcher s i n the Faculty of Hea lth Sci ence s h ave been respon sible for the ir own
data management. This often takes the format of paper-based records and/or spreadsheets. Data
storage, privacy and security are variable and dependent on the individual researcher. Advice and
support for data management is available from the University Library in the form of a web link [3].
However, there is limited support for electronic database design and maintenance.
Developing the capacity for accurate and reliable data acquisition was thus our first step in
strengthening the research endeavor in our Faculty. Inadequate computer facilities and/or computer
software are listed as a constraint to research in almost 50% (9/19) of cohort studies in India, Mexi-
co, Nigeria, South Africa, Sweden, Tanzania and Uganda [4]. Moreover 13 of 19 cohort study leaders
(72%) listed database management as a constraint to research [4]. In addition, information systems
are listed as a limiting capacity for the implementation of the WHO Millennium Development
Goals. An obvious strategy for strengthening capacity is to integrate existing knowledge into prac-
tice [5]. Clinical and translational research requires a robust and secure manner in which to collect,
store, transfer and analyze data [6]. Researchers require environment specific data management
tools in order to undertake accurate, safe and secure data curatorship. An independent researcher
may not have access to formal informatics and data management resources. Health care researchers
often have limited information technology and computer skills. Emergent researchers find this to be
another constraint in carrying out research [5]. Data quality is improved by enabling data collection
by a diverse team [7].
REDCap is a web based software tool developed at the Centre for Clinical and Translational Re-
search at Vanderbilt University in Nashville, Tennessee, USA. REDCap provides researchers with a
tool for design and development of electronic data capture tools [6]. The strength and utility of
REDCap is supported by web based training materials in the form of prerecorded tutorials, online
webinars, and help documentation, most of which are integrated into the software itself [8]. RED-
Cap allows the researcher to choose and define their data elements. Although this may limit interop-
erability, it is a consequence of the user-defined metadata model. Each individual REDCap user has
sole discretion as to who has access to their data. REDCap has a growing international user base
with 937 institutional partners in 75 countries at time of writing [9]. The geographic distribution is
concentrated in North America and Europe. In the latter part of 2013, Africa had approximately 26
institutional partners of which five were in South Africa [9]. The REDCap consortium provides edu-
cation and support including two weekly online conferences, one for REDCap users and one for
software technical support.
Case Report
M. Klipin et al.: Installing a Web Based Database Supporting Biomedical Research
For personal or educational use only. No other uses without permission. All rights reserved.
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2. Objective
In order to assist other institutions that may lack the necessary in house Information Technology ca-
pacity to set up a functional instrument for data support, this paper describes our experience of the
installation, infrastructure requirements and user support for REDCap. We include an analysis of
end users after the first year.
3. Methods
In July 2012, the Wits Faculty of Health Sciences installed REDCap in terms of the user agreement
with Vanderbilt University [9]. The user agreement allows academic and non-profit institutions to
download the REDCap software at no cost. After ensuring system stability, REDCap was opened for
accredited users in August 2012.
According to the REDCap nomenclature a project is a collection of instruments that allow data
curatorship for one study. An instrument may be a survey or a form or a combination of both. Each
survey or form has a collection of fields. A project is moved from development to production when
the user is comfortable with the design and function of the project. The project was initiated and
managed by a group consisting of three academic staff.
1. A physician with an interest in clinical data management (Faculty of Health Sciences)
2. A research scientist assigned as the REDCap administrator (Faculty of Health Sciences)
3. A computer scientist with experience in bioinformatics, for software and server support (School
of Electrical and Information Engineering).
The faculty of Health Sciences has recognized the need for information technology support. Dedi-
cated time for the maintenance and support of REDCap was deemed a priority. The three staff each
had specific time allocated to the REDCap project away from their core responsibilities from their
relevant departments. This brought together the necessary expertise without financial cost to the
faculty. The REDCap administrator was allocated 0.2 Full Time Equivalents (FTE), 0.1 FTE for the
lead clinician and 0.05 FTE for server and software support. Postgraduate computer science students
were employed at University rates to create added functionality (ReportMyWay and a link to the
Vermont Oxford Network (Wits2VON)).
3.1. Installation, Hardware and Software Support
The structure and functionality of REDCap is well described elsewhere [6, 9]. The installation of the
REDCap software requires specific information technology expertise related to servers, security and
access settings, systems backup and maintenance. No clinicians at our institution had the requisite
skills. A colleague from the School of Electrical and Information Engineering assisted with the in-
stallation and maintenance of the hardware and software. This cross-Faculty collaboration was es-
sential for creating a stable platform for REDCap. The instructions for the installation of REDCap
are available on the website [9].
A summary of our experience follows. The installation and maintenance of REDCap can be split
into two parts. The installation of the REDCap software, and the infrastructural and environmental
considerations.
3.1.1 The Installation of the Redcap Software
The installation of the REDCap Software requires basic system administration skills (in our case
Linux). Although possible to use existing machines, it is good practice to install and run REDCap on
dedicated machines. The systems administrator must be competent at installing and upgrading soft-
ware on Linux systems and have knowledge of the basics of MySQL. The installation documentation
for REDCap is comprehensive and a good Graphical User Interface is provided through myPHP.
The initial installation of REDCap took one day, although with experience it could be done in less
time. REDCap systems upgrades are released regularly and require only 15 minutes to install. Oper-
ating systems updates must be done regularly, but are easy to automate or semi-automate.
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3.1.2 Infrastructure and Environmental Considerations
This is particularly important, as REDCap is a mission critical system. As user numbers grow, more
researchers use the system and system failure or downtime becomes more problematic. Planning for
scalability and reliability is crucial. Each organization needs to take this into account. This requires
planning and a reasonable level of expertise with virtualization software and file systems.
For reliability, we do risks assessment — what faults are we mitigating against, their probability of
occurring and the damage caused if there is fault. We consider both the recoverability of the data
and availability of the REDCap service. In our case, a single computer or disk failure over the life-
time of the system is a likely occurrence and we must protect against it. A catastrophic failure in our
server room that may affect more than one machine (e.g. a fire) is highly unlikely but we feel we
need to protect against it. A city-wide catastrophe like an earthquake is not a risk we mitigate against
in our environment.
Our risk policy is:
If the machine on which our REDCap services fail, we wish to lose no more than 24 hours of data
update, and we want our REDCap service to be up and running within 24 hours.
If there is a more catastrophic failure, which wipes out two independent systems in our secure
data center, then we wish to lose no more than a week’s data. In this event, a REDCap system
would have to be installed from scratch and the time taken to get running again would depend on
the nature of the failure, but in a realistic scenario some sort of service should be available within
a further week.
It is recommend ed that REDCap be run a s two mach ines: a database server, and the REDC ap f ront-
end.
A practical and desirable way of running this is to set up these as virtual machines. Virtualization
is a technology that allows one physical computer to run one several “virtual” computers, which
share the physical hostsresources. These virtual machines behave and appear both externally and
internally as if they were real computers.
Virtualization has a small performance penalty but has several advantages. It allows resources to
be shared making systems more cost effective. And although multiple virtual machines may run on
the same physical machine, they each run in their own container thereby promoting security and re-
liability. Finally, the state or “image” of a virtual machine may be saved, and moved to another physi-
cal machine, which allows quicker recovery from physical failure.
There are different virtualization systems available. For our main REDCap system we use a sys-
tem called KVM [10], but we have also very successfully used Oracle’s VirtualBox system, which
runs on a range of computer systems.
Management of file storage is important. The Logical Volume Manager (LVM) [11] is a very flex-
ible way of managing physical storage, allowing several physical disks to managed as one unit, and
then partitioning this into logical volumes. These logical volumes can easily be archived, and moved
to other physical machines.
For a REDCap system which will support many projects over an extended period, the combi-
nation of KVM and LVM makes the management of the underlying physical systems more flexible
and robust. To accomplish this level of service, we do the following:
A daily backup is made of the SQL database and REDCap uploads, and kept on a separate ma-
chine on a RAID6 disk. For the SQL database, we keep copies of the last 7 days and then weekly
snapshots for the previous 7 weeks. This means that three disks would need to fail independently
to lose our data.
On a third machine, we make weekly copies of our virtual machine images. This acts as an addi-
tional weekly backup of the data, but more importantly means that should our REDCap physical
machine fail, we can get the REDCap virtual machines running again on another virtual host,
and just restore the database to a more recent state from the daily backup.
Finally, on a weekly basis, a copy of the current database and uploads folder is encrypted and co-
pied to a site at a neighboring university. If there were catastrophic failure in our server room, we
would lose no more than a week’s worth of data.
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It is difficult to estimate the overall cost of establishing this infrastructure, especially as some of the
costs are amortized with other projects. However, a realistic estimate is that the overall cost of instal-
ling and running REDCap has been about one-person month of a skilled system administrator over
a two-year period.
For our one-project installations on a MacMiniTM, backup is done using Apples TimeMachineTM
with periodic upload of the SQL database to a central server.
In summary, the cost and expertise in installing REDCap itself is not onerous. It is a stable pack-
age that has good documentation and support. However for a system that supports many users and
is mission critical, a higher degree of expertise is needed to ensure the system works reliably.
3.2 User Defined Software Development
REDCap is designed as a dynamic instrument. Institutional partners may modify and expand the
capacity of the source software. This benefits both the end-user and the REDCap community. A
user may tailor the software to their own specific needs and share this added functionality with the
greater REDCap community.
Two of our projects are worthy of mention. The first was in response to multiple requests for a
user defined printout of completed datasheets we called ReportMyWay. In its native form REDCap
generates a PDF document with all fields included. This can result in a bulky redundant paper docu-
ment especially when branching logic is used. ReportMyWay allows end users to select only chosen
fields for a printable report.
The second custom application was a data link between one of our REDCap databases and the
Vermont Oxford Network database to allow safe and effective transfer between the two and is
termed the Wits2VON plugin.
The Wits2VON plugin makes use of a PHP plugin to the REDCap system. eNICQ software is
made available to all Vermont Oxford Members as a benefit of membership. The eNICQ application
supports the importing of data via tables in its own database. This database is run on the Microsoft
SQL Server architecture (MSSQL). Since the PHP programming language supports the querying of
an MSSQL database, the plugin accomplished data transfer to eNICQ via this querying.
In summary the Wits2VON plugin retrieves data from a REDCap database via standard PHP
querying of a MySQL database. The plugin processes this data, sorting into the exact format which
the eNICQ application requires, as described in a document which the Vermont Oxford Network
provides to developers [12].
The Wits2VON plugin connects to the remote server running the eNICQ application and places
all the formatted data into the eNICQ database. The eNICQ application now has access to this data.
3.3 Legal and Ethical Considerations
Technology tends to evolve faster than legislation and the Internet has created new legal and ethical
questions. The University Legal Office and the Human Research Ethics Committee (HREC) were
consulted regarding the REDCap non-profit end-user agreement. Two common areas of concern
were; the site of data storage, and who may have access to the data captured using REDCap.
Following discussion an institutional user agreement was created with input from the Wits RED-
Cap team and the University Legal Office to inform our users. The process of liaison with the Legal
Office and the Human Research Ethics Committee within the institution was a bidirectional learn-
ing process.
The installation of REDCap was completed in July 2012. For the first month the group created
test projects and validated the functioning of REDCap on our servers. Data security and backup
were verified and the stability of the REDCap software on the University system was tested. Only
when we were satisfied with the integrity of the installation did we open it to our end users. The fully
functional software was made available to users on 7 August 2012.
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3.4 Hands on Training
Bi-monthly Wits-REDCap user-group meetings were hosted by the REDCap administrator for feed-
back from users. A consistent request for hands-on training resulted in a formal workshop in August
2013.
3.5. Data Collection
We reviewed our user numbers graphs and correlated them with the hands-on REDCap workshop.
The REDCap software keeps a record of concurrent users, daily user logins, projects created, pro-
jects moved to production, active users, first-time visitors, logged events and page hits. News of the
REDCap installation was spread by word of mouth, presentation at Faculty research fora and via the
Faculty research communication infrastructure.
We assessed user numbers, number of projects created and number of projects moved from de-
velopment to production before and after a hands-on REDCap training workshop. The workshop
was conducted by the REDCap administrator in a computer laboratory. Each user had access to an
internet-connected computer terminal. The first REDCap computer workshop with hands-on train-
ing was conducted in August 2013. The number of attendees at the workshop was limited to 40. The
aim of the workshop was to guide new users through the steps of creating a REDCap project of their
own.
4. Results
4.1. Budget
In order to set up the support system, a number of costs were incurred. Two servers were purchased
at a cost of R80000.00 (US$ 8000) through the Institutions Strategic Planning and Allocation of Re-
sources Committee (SPARC) fund. Each server has dual Xeon E5-2620 processors, 6TB of disk and
32GB of RAM. The REDCap and database servers run as virtual machines on the one while the
other acts as a backup device. The databases are backed up daily and several copies are kept on site.
Once a week a copy is encrypted and stored off-site. Security certificates totaled US$570 for three
years. The estimated annual costs of the three core staff at 0.2 FTE for the REDCap administrator,
0.1 FTE for the lead clinician and 0.05 FTE for the Information technology support are US$ 50000,
US$ 8000 and US$ 4500 respectively. (Currency conversion at 10ZAR to 1 US$). Specific software
developments (ReportMyWay and Wits2VON) were funded by the Health Sciences Research Office
(approximately $7800).
4.2 User Accrual
Following installation in August 2012, the numbers of registered users increased until the end of the
year to a total of 81. The cumulative uptake was approximately seven new users per month in the
first year. However, following the hands-on workshop in August 2013, the user base increased by 59
in one month and brought the total number of active users to 140 by the end of August 2013 ( F i g -
ure 1).
An increase in the number of projects created and moved to production was noted over the same
time period ( F i g u r e 2 a n d F i g u r e 3 ) . I n t h e f i r s t y e a r , a p p r o x i m a t e l y t e n p r o j e c t s p e r m o n t h w e r e
created with only two per month being moved to production status. After the workshop, 45 new
projects were created and 18 were moved to production.
As of August 2013, there were 133 projects on the Wits REDCap system. 35 projects in produc-
tion and 78 projects still in development. 20 projects were archived, and no longer active. This
number does not take into account projects that were deleted before the date of this report; neither
does it include practice databases. The mean lifetime of the production projects by the end of No-
vember 2013 was 4.95 months (Median 3, SD 3.67). 22 Users had created production projects, the
average production projects per user was 1.64 (Median 1; SD 1.46).
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The projects could be broadly divided into four functional groups. The largest group was research
(81), followed by quality improvement (28), and operational support (16). Eight were not classified.
A Breakdown of Project by Research Types is provided in Table 1.
5. Discussion
A major barrier to the use of electronic data tools in the Faculty of Health Sciences has been the lack
of information technology support necessary for the installation and maintenance of such tools. In
our institution three people with the necessary knowledge of servers, clinical process and user sup-
port manage the Wits REDCap project as an adjunct to their other responsibilities. This is one com-
ponent of an ongoing effort to develop a robust informatics infrastructure within the faculty.
The widespread adoption of REDCap as a data capture and management instrument is attributed
to its ease of use for researchers with limited Information Technology (IT) training. Extensive web-
based training modalities are central to REDCap’s adoption [8]. Moreover there is no cost to an aca-
demic institution for the software and limited cost for installation, maintenance and security. Sup-
port is provided for both technical staff and users at a weekly online consortium meeting hosted by
the REDCap developers at the Vanderbilt University Centre for Clinical and Translational Research
in Nashville Tennessee, USA.
There is a paucity of information on the provision and use of electronic data resources for audit
and research within the greater healthcare enterprise in the developing world. The global disparity
in research can only be resolved if teaching and training initiatives are developed in parallel to scien-
tific expertise [13].
Te ch n o lo g y i m pl e m en t a ti o n i n h ea l t hc a r e i s a n e st a b li s h e d f i el d . T he l im i t ed s uc c e ss o f m a ny
health informatics projects reflects the complexity of health systems and can broadly be ascribed to
three categories; technical shortcomings, project management shortcomings and organizational
shortcomings [14].
REDCap as a database instrument can be implemented and managed by a small team.
Setting up a practical and user-friendly database instrument, which can be modified according to
the needs of the clinicians and researchers, serves a valuable and extremely important role in en-
abling research. Researchers do not want to spend their time on finding data management solutions
or solving technology problems. They would rather spend their time on research [8]. The quality of
data determines the quality of information. It is crucial that clinical databases are well designed and
curated if they are to perform their function to inform researchers, providers and improve clinical
care [15, 16, 17].
After one year of Recap being introduced at the University of the Witwatersrand Faculty of
Health Sciences there were 133 active projects of which 81 were research projects. User defined soft-
ware development was created to facilitate report printing (ReportMyWay) and a data transfer inter-
face with the Vermont Oxford Network (Wits2VON). Repeated user requests resulted in scheduling
hand on user training workshops. The introduction of REDCap has created a platform of trust in in-
formation technology tools and users have a positive attitude towards future IT projects within the
Faculty of Health Science.
6. Conclusion
The Faculty of Health Science at the University of the Witwatersrand has introduced REDCap as a
component of an ongoing effort to create a robust informatics infrastructure. REDCap is a valuable
data management instrument that we believe fulfills a need within our Institution. The installation
and maintenance of software such as REDCap requires skills that few clinicians have, but are easily
accessed by collaborating with by IT professionals.
The major difficulties experienced were an initial distrust and suspicion of an electronic data
management system. In part this may have been due to negative previous experiences with elec-
tronic databases, doubts around data security, privacy and the legal implications surrounding elec-
Case Report
M. Klipin et al.: Installing a Web Based Database Supporting Biomedical Research
For personal or educational use only. No other uses without permission. All rights reserved.
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© Schattauer 2014
tronic data. However, the ease of use, stability and rapid adoption of REDCap had a number of sec-
ondary benefits.
Consultations with the Legal and Ethics Offices of our institution created support for REDCap
and an appreciation for data security and privacy. A functional implementation of REDCap was
possible due to appropriate hardware, software and staff. A large number of REDCap users can be
supported successfully at low cost by few staff. Collaborative meetings between software developers
and clinicians enabled the creation of custom applications for data transfer between collaborating
networks. Following requests for user support we created the capacity for hands-on training which
increased the uptake and use of REDCap. Ensuring system stability before allowing access to end
users ensured a positive first experience and was central to creating confidence amongst users of the
platform. We believe REDCap, as well as fulfilling a need for data management, has created an
awareness and support for functional information technology instruments that has paved the way
for implementation of further informatics tools within the Faculty of Health Sciences at Wits.
Clinical Relevance Statement
Clinicians may not have the requisite skills to install and maintain data curatorship instruments
with the security and privacy necessary for clinical use. Collaboration by computer scientists, soft-
ware engineers and clinicians resulted in the effective installation and use of REDCap within our
institution. User defined applications may be created by collaboration between clinicians and soft-
ware engineers.
Conflict of Interest
The authors declare that they have no conflicts of interest in the research
Human Subjects Protections
No human subject data was used in this paper.
Acknowledgments.
The authors would like to thank the University of the Witwatersrand Strategic Planning and Re-
source Allocation (SPARC) fund for funding servers and software development.
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Fig. 1 The cumulative rate of user uptake of REDCap
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Fig. 2 Number of projects created vs. time. The sudden increase in gradient correlates with the user workshop.
Case Report
M. Klipin et al.: Installing a Web Based Database Supporting Biomedical Research
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Case Report
M. Klipin et al.: Installing a Web Based Database Supporting Biomedical Research
Fig. 3 Number of projects moved to production vs. time.
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Table 1 A Breakdown of Project by Research Type
Research type
Clinical trial/study
Repository
Basic/bench research
Epidemiological
Translational research
Behavioural or psychosocial
Other
Total
Number of Projects
36
26
18
17
5
3
5
81
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... Nesse contexto, a tecnologia digital desempenha um papel fundamental como ferramenta para intervenções em saúde na contemporaneidade, trazendo consigo implicações multifacetadas, como o armazenamento de dados de saúde por meio de sistemas digitais, além das inovações tecnológicas nas áreas de inteligência artificial, nanotecnologia e genômica 14,15 . Esses avanços têm potencial para impactar positivamente a assistência, proporcionando abordagens inovadoras na área da saúde 15 . ...
... Portanto, as ferramentas digitais têm alcançado um importante papel como aliadas nas estratégias assistenciais nas comunidades tradicionais. Assim, diante dos atuais desafios, diversas iniciativas nacionais e internacionais surgiram para explorar o uso dessas tecnologias na promoção da saúde e na prevenção de doenças [15][16][17] Ademais, a literatura descreve a segurança do armazenamento das informações e a possibilidade de importação para pacotes estatísticos, quando se deseja produzir informações de pesquisa, usando diferentes instrumentos de acesso, como tablets, Android e notebook 14,32 . Essas características também foram vivenciadas em campo, especialmente pelos ACS de saúde: ...
... O que eu mais gostei é que essa plataforma mantém total sigilo ao guardar a informação de cada paciente (ACS). rapidamente, com acesso a qualquer momento, desde que esteja cadastrado 14 : "Sim, já que isso dá um panorama completo e rápido acesso. Isso facilita muito as coisas e guia melhor na hora de tomar decisões" (Discente do sexto período). ...
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Resumo: Introdução: As comunidades tradicionais são grupos de indivíduos socialmente organizados que partilham comportamentos econômicos, socioambientais e culturais comuns. Entre elas, destacam-se as comunidades indígenas no Brasil, que vêm sofrendo o impacto da urbanização, do crescimento de doenças crônicas e epidemias e do aumento da insegurança alimentar. Relato de experiência: Este estudo teve como objetivo descrever as experiências da equipe de saúde, quanto ao uso de uma ferramenta de gestão de dados na assistência, em uma comunidade indígena no Nordeste brasileiro. Trata-se de um relato de experiência do uso de uma ferramenta digital nas ações assistenciais em uma comunidade tradicional. A equipe de saúde foi dividida em dois grupos: agentes comunitários de saúde e estudantes de Medicina. Discussão: A descrição das experiências e a análise das narrativas resultaram na identificação de 258 citações, que foram classificadas em 12 categorias, relacionadas ao objeto de estudo. Dentre estas, as questões ligadas aos benefícios da ferramenta foram as mais mencionadas (43,41%), em que os subgrupos abordaram diferentes reflexões. A segunda categoria mais citada se referia às limitações da ferramenta (15,11%), sendo a necessidade do sinal de internet o ponto crítico. Ou seja, esta pesquisa mostra vantagens da ferramenta na atenção à saúde, mas também explicita fragilidades inerentes ao seu uso, de modo a trazer questões importantes dessa vivência e estimular práticas semelhantes. Conclusão: Esse relato de experiência, como método científico, traz importantes questões vivenciadas, relacionadas à aplicabilidade prática de uma ferramenta digital em uma comunidade indígena. Apesar de ser inegável que há pontos de fragilidade evidentes, eles não comprometeram o resultado afirmativo da vivência, melhorando a assistência.
... More importantly, these technologies need to protect patient's information (Bowman & Maxwell, 2018;Colpas, 2013;Shuren & Livsey, 2001). One such tool ideal for nursing research is the Research Electronic Data Capture (REDCap) platform (Dunn et al., 2016;Klipin et al., 2014;Maré et al., 2022;Obeid et al., 2013). ...
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Background Nursing interventions in the post‐operative time period including psychological and emotional support, adverse event education, and instructions for follow‐up care contribute patient satisfaction, safety, and quality of life. However, the time spent in the post‐anesthesia care unit (PACU) and hospital continues to shorten around the world to reduce health care spending and improve patient outcomes. Nurses conducting research during the important post‐operative recovery period need to utilize unique techniques and emerging technologies to contact, recruit and collect data outside of the hospital setting including the Research Electronic Data Capture (REDCap) platform. Aims This paper describes the feasibility and acceptability, facilitators and barriers of the software application, REDCap, to complete a repeated‐measures, descriptive correlational study in patients undergoing outpatient breast cancer surgeries. Methods & Materials The recruitment, data collection and storage were completed utilizing the secure REDCap Platform. The Institutional Research Board (IRB)‐approved study was a repeated‐measures, descriptive, correlational study with data collection at three time points. The data points aligned with important transitions and routine visits to improve data collection feasibility and increase relevance to clinical practice. Results The sample consisted of women diagnosed with breast cancer undergoing breast conserving surgery between August 15 and October 15, 2020. There were 123 potential participants, of which 76 started the surveys and 75 participated (61%) responded and participated in the study on Post‐operative Day 1. Fifty‐nine participants (78%) completed the surveys on post‐operative Day 14. Discussion As the frequency of outpatient treatment increases, nurses conducting post‐operative research will need to collect the data outside of the hospital setting. Conclusion Email provides a method of studying new phenomena by recruiting participants, providing information about the study, and collecting results in a non‐traditional setting. REDCap provides a method to facilitate nursing research through a securely encrypted integrated process.
... Some commercial electronic health record systems and systems like REDCap1 need to be setup, need to be integrated into the institutional IT infrastructure, may come with costly license fees and are not tailored specifically to patients with LUTS. In addition, an existing database may need constant maintenance, especially to give the researcher the possibility to adapt and change the database structure at any time [4]. A scientific database of this kind is generally not suitable for monitoring the patient's therapy. ...
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Objectives Clinical, time-dependent, therapeutic and diagnostic data of patients with LUTS are highly complex. To better manage these data for therapists’ and researchers’ we developed the application ShinyLUTS. Material and methods The statistical programming language R and the framework Shiny were used to develop a platform for data entry, monitoring of therapy and scientific data analysis. As part of a use case, ShinyLUTS was evaluated for patients with non-neurogenic LUTS who were receiving Rezum™ therapy. Results The final database on patients with LUTS comprised a total of 8.118 time-dependent parameters in 11 data tables. Data entry, monitoring of therapy as well as data retrieval for scientific use, was deemed feasible, intuitive and well accepted. Conclusion The ShinyLUTs application presented here is suitable for collecting, archiving, and managing complex data on patients with LUTS. Aside from the implementation in a scientific workflow, it is suited for monitoring treatment of patients and functional results over time.
... Para cargar los datos de los pacientes se utilizó la plataforma de REDCap (Research Electronic Data Capture) 13 un software de captura de datos electrónicos que permite diseñar bases de datos de investigación para ensayos clínicos y que se encuentra diseñado específicamente para proteger la privacidad de los datos del paciente. De los registros electrónicos de nuestra institución se obtuvo la siguiente información: ...
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Introducción: La colocación de drenajes ventriculares al exterior (DVE) es uno de los procedimientos más frecuentes de la neurocirugía, tanto en pediatría como en adultos, sin embargo, no se encuentra exento de complicaciones. La tasa de infección asociada al drenaje puede serdel 25%. En nuestro Hospital encontramos una incidencia del 22% anual.Al ser sistemas que no cuentan con una regulación de la salida del líquido, el paciente debe permanecer en decúbito dorsal estricto todo el tratamiento.Nuestro objetivo es diseñar un nuevo sistema de drenaje ventricular al exterior de tunelización larga (DVET) que lidie con estos problemas al mismo tiempo que reduzca los costos hospitalarios.Material y métodos: Se realizó un ensayo clínico prospectivo en el que se colocaron 25 DVETL entre el 1/9/2018 al 1/5/2019 que se compararon con el sistema tradicional de DVE.Resultados: La presencia de fístula se asoció más frecuentemente a los DVE en comparación con los DVETL, esta diferencia fue estadísticamente significativa (30% vs 8% p=0,029). La presencia de infección asociada al drenaje fue significativamente mayor en los DVE en comparación con los DVETL, esta diferencia fue estadísticamente significativa (22% vs 0% p=0,009). Los pacientes con DVE tradicional utilizaron el doble de recursos y generaron el doble de costos que los pacientes con DVETL.Conclusión: Se realizó una presentación detallada del nuevo sistema de DVETL que presenta una disminución en la incidencia de fístula de LCR e infección asociada al drenaje. A su vez aparenta ser costo-efectiva en comparación con el sistema tradicional de DVE.
... REDCap is free, but it is not considered open source. A license is required to operate it, and it can be installed and managed by a small IT team 28 . In the context of this work, a REDCap is maintained by the Brazilian Network for Tuberculosis Research (REDE-TB) was used (available at https:// redcap. ...
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... REDCap has been found to increase the number of projects completed and reduce the time required for completion at the Faculty of Health Sciences, University of the Witwatersrand, where it was first used. 77 This highlights the importance of encouraging RECs in SSA to invest in and use management systems to address current administrative challenges, particularly in institutional RECs. ...
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... REDCap is a free software, but it is not considered open-source. A license is required and it can be installed and managed by a small IT team [28]. In the context of this work, a REDCap instance maintained by the Brazilian Network for Tuberculosis Research (REDE-TB) was used (available at https://redcap.redetb.org.br/, ...
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