REDCap is a secure web platform for building surveys and is well established for collecting clinical trial data. REDCap was created in 2004 at Vanderbilt University and is now supported by a global consortium of not-for-profit organisations. REDCap has been around for a while and is well known for collecting clinical trial data, but can be used for any kind of surveying.
There are two versions of REDCap:
RCSI provides this local instance of REDCap to staff and students with an RCSI address. Other universities may have their own local instance.
Access to this local instance is managed by Christopher Byrne (RCSI REDCap Administrator) in the Office for Research and Innovation (ORI). If you wish to use REDCap for your research project, you must complete and submit an application form to the REDCap Administrator in the ORI, along with your letter of ethical approval. If you have completed a Data Protection Impact Assessment (DPIA) as part of your ethics submission, you should also submit this. Once approved for use, you will be set up as a project manager in REDCap. At present, there are no extra costs to use REDCap at RCSI, but this may change if demand for storage grows.
Data collection instruments can be built online in real-time through the Online Designer, or can be built offline through a spreadsheet called the Data Dictionary.
RedCap contains instrument design and data validation features like auto-validation of entry (pop up error message). You can use multiple instruments to collect data for your project e.g. you could have a page to collect baseline measures such as date patient began supplement, laboratory results, and then several standardised instruments.
You can run reports inside REDCap to view the data as responses come in. Basic analysis and statistics are available inside the tool. For more robust analysis, data can be downloaded, or exported, in multiple formats. REDCap creates all the files you’ll need for analysis in statistical packages. Many users at RCSI use REDCap in this way.
While some basic analysis can be carried out inside of REDCap, users typically export the anonymised version of the data out of REDCap for more complex analysis using a statistical tool, such as STATA.
Data can be anonymised inside of REDCap using editing tools (e.g. removal of identifiers, and pseudonymisation) before export. Data can be exported for storage in our institutionally-provided cloud storage (OneDrive for single users, SharePoint for team users) for the duration of the research project.
Data storage and security: Data on our local instance of REDCap is stored on a standalone sever inside the MS Azure infrastructure at RCSI, which is GDPR compliant (more on this below). In this way the local instance at RCSI is probably more secure than other commercial products for gathering survey responses. Access to the data is via login using an RCSI email address and a password.
RedCap is not suitable for long term storage or access to data as there is a significant risk of data loss, as this server is not backed up. Users are therefore advised to download and store an anonymised copy on their data on completion of data collection.
Access control to prevent unauthorised consultation, alteration, disclosure or erasure of personal data: When you first login to the RCSI version of REDCap, you are prompted to create a password and each user has access their own data only. Users can create their own survey/data capture tool within RedCap and then share the survey with their respondent.
It is possible to assign different user rights inside of a REDCap project file, thus limiting some team members from accessing personal data. For example, the clinical partner at the hospital might be the only person who can see the patient’s personal data in RedCap, while the research partner in RCSI can see the anonymised version of the file only.
REDCap provides a logging tool which shows all events that have happened inside of your project including data changes and field exports.
Consent before processing: REDCap contains e-consent, whereby the user cannot proceed to survey unless they have indicated they consent to participate and provide their personal data.
Is the data collected by REDCap classed as anonymous, pseudonymised or indentifiable data? The answer to this question is dependent on the degree of personal information that is collected by the researcher i.e. whether their survey contains questions or variables that elicit personal data, and at what point these data are then anonymised by the researcher inside of REDCap.
On approval for access to REDCap, researchers must agree to take personal responsibility for the data they gather and store with REDCap. This includes a commitment to permanently wipe the data they capture from REDCap, once data collection has completed. The researcher is responsible for permanently wiping their data off of REDCap – there is no inbuilt function to automate this.
RCSI is currently drafting a code of practice for using REDCap, which includes advice around deletion and encrypted storage. Research data is managed in accordance with the RCSI Research Data Management Policy whereby research data must be accurate, complete, authentic and reliable, stored securely, preserved where necessary and accessible as required. Data must be retained and disposed of securely according to the relevant retention and disposal schedule, in accordance with legal, ethical, research funder and collaborator requirements and with particular concern for the confidentiality and security of the data. Research data that underpins published results or is considered to have long-term value should be retained for a defined period of time, subject to informed consent to do so, where relevant. Data should be preserved in a suitable data repository. For more on this topic please refer to the Data sharing and long term preservation section of this guide.
There's no expert support on REDCap in RCSI, however if you have a question about using it you can submit this to the user forum.
Additionally, REDCap provide lots of user videos and information on the user forum for troubleshooting.