Table of contents
REDCap project life cycle and data security
Research notice, data privacy notice, and informed consent
What is REDCap suitable for?
REDCap is suitable for collecting all types of personal data, including sensitive information related to special groups and data with a high level of confidentiality. It is an effective tool, particularly for implementing longitudinal and follow-up surveys.
Special group personal data includes information about health, sexual orientation and behavior, religious or philosophical beliefs, and political opinions. Additionally, high-confidentiality personal data includes criminal records and bank account details.
Note! JYU's Webropol is also suitable for the collection of special categories of personal data and data with a heightened level of confidentiality, provided that special security measures are used. These are described in the Webropol guide for Intranet Uno: Webropol - Intranet Uno (jyu.fi). Webropol is an easy-to-use tool for individual surveys.
Note that the data is not analysed in REDCap, it is a tool for electronically collecting data in questionnaire and survey research. REDCap is suitable for creating surveys, collecting data, and temporarily storing the collected data during research. The data is exported from REDCap in .csv or .pdf format for analysis and then manually transferred to an appropriate analysis software or a secure storage environment provided by JYU or CSC (see the checklist below).
REDCap project life cycle and data security
1. Designing a data management system. Before you start using the software, carefully document the type of data you will collect in your data management plan. Will the data contain personal data of special categories or other highly confidential information?
You can check REDCap's security classification in the dynamic confidentiality table (in Intranet Uno).
Usage tip: With REDCap’s Online Designer tool, you can prepare a survey form in advance, ensuring that variables containing personal information, such as name and contact details, are labeled as identifiers.
This allows you to filter the data for analysis after data collection, so that you can export the data from the program in a pseudonymous format without the direct identifiers you have marked:
2. Roles, responsibilities and rights. When you plan to implement the program, clearly define in your research's data management plan the roles, responsibilities and permissions for handling the data you collect. Using REDCap's user rights tool, the project manager can assign different access rights to different roles. For example, only those persons who have a specific reason in the research plan to handle the identified part of the data will have access to it. You can also specify, for example, that only the responsible manager or another person agreed in the project has access to export the data out of the program.
In the User Rights menu, you can define the rights of an individual user from the Edit user privileges menu behind the link in the user ID:
Tutorial video: configuring access and permissions in REDCap
3. Exporting the data to a safe location. For security reasons, data should not be downloaded to your computer's Downloads. The automatic download location of files can be changed from the computer's Download settings. A suitable temporary download location is the storage space on the computer hard drive; for JYU devices, the MyTemp folder on the C: drive:
1.
2.
3.
4.
5.
6.
4. Selecting a suitable storage location. Data is exported from REDCap for analysis and further handling in a similar way as in Webropol. if the data contains special categories of personal data or otherwise secret or highly confidential information, select a JYU storage location that is suited for sensitive data.
- The best place to store the pseudonymisation code list is always in a separate folder in CollabRoom.
- Pseudonymised data can be exported from REDCap directly to SPSS, Stata, SAV or R.
- When data is exported to Excel, does the data still contain direct identifiers (e.g. name, contact details) or indirect identifiers (e.g. open answers)?
a) If not, and the data is pseudonymised, Nextcloud is suitable.
b) If included, and the data needs to be stored directly or indirectly in an identifiable format for analysis, the options are encryption of the data with Cryptomator and storage in Nextcloud or storage on the project network station created on the S: station, the researcher's U: station or the CSC's national SD Connect storage service. Note: If you protect your data with Cryptomator, store the encryption key you create with extreme care! Your data will be lost forever if you lose the encryption key!
5. Closing the REDCap project and removing data from the application
Once the data has been collected and exported out of REDCap for analysis, and the need for the REDCap project ends, it is the responsibility of the project manager to ensure that the project is removed.
If the project has been implemented in Development mode, it can be easily deleted using the DELETE function in the Other Functionality menu of the project (Development mode projects) or request the deletion of the project using the Other Functionality menu function, in which case the JYU REDCap admin will delete the project on behalf of the researcher (Production mode projects).
Projects in production mode are deleted by making a deletion request to JYU REDCap support either in HelpJYU using the Contact REDCap support form or in REDCap using the "Contact REDCap administrator" link in the left menu:
6. When your employment, affiliation, or study right at the University of Jyväskylä ends
Export all data from your project and close the project when the data collection is complete and the project is no longer needed.
Projects in development mode are closed using the Erase all data and DELETE functions in the Other Functionality menu of the project. To close a project in Production mode, make a request in the Other Functionality menu and JYU REDCap administration will close the project. Please do this well before your employment, other organizational affiliation or study rights at the University of Jyväskylä expire. You can import the project codebook and matrices in a file format from the project, so that you can use them in your research in the future.
Research notice, data privacy notice, and informed consent
If you collect an electronic survey, you can use REDCap in a similar way as outlined in the Webropol instructions of the JYU Ethics Committee guidelines. You can use and adapt the JYU model template available in the template listing for a newly created REDCap project. The model form includes fields for linked or attached research notification and data privacy notice, as well as selected fields for asking informed consent in an online survey based on the regular JYU consent model form. Note: Always tailor the model template for your own project, and take time to test the informing and consent functionalities well in advance before opening the survey.
Survey research
Surveys are one of the main features of REDCap, allowing users to easily collect various data from research participants. With REDCap’s survey functionality, users can send surveys to specific groups at specific times.
Introduction of surveys
To start using surveys in your REDCap project, you must first set up surveys in your project. Note: The JYU template forms are already activated as queries, so there is no need to reactivate them. From the Project Setup tab, click the Enable button under "Use surveys in this project?"
When you have enabled surveys in your project, individually enable each instrument that you want to use as a survey. Go to the "Online Designer" page (the link is in the ‘Design your data collection instruments & enable your surveys’ section). Each instrument has a column labeled ‘Enabled as survey,’ and you can enable it as a survey by clicking the ‘Enable’ button in that column (highlighted in yellow in the image below). Clicking it will take you to the "Modify survey settings" page.
Click "Save Changes" to make your instrument available as a survey. If you want to change the layout of your survey or other options, see the next section "Survey Design".
Survey design
When you deploy the tool as a survey or change the survey settings (by clicking on the relevant button in the Online Designer), you will be taken to the "Modify survey settings" tab.
View a survey by section
In the survey settings, you can change the look and customise the way your survey is answered and closed. For example, you can make a survey appear on multiple pages by creating fields in the survey, defining them as sections using the "Section"- field type, and then selecting the "Survey Customizations" option in the Survey Settings menu for the way the questions are presented.
Closing the survey
If you click on the green icon in the "Enabled as survey" column, you will be taken to the Edit Survey Settings tab, which should read "Survey Status" in the top row, with a drop-down menu with the options Survey Active and Survey Offline. If you select Survey Offline, the survey will no longer be open to respondents. Remember to save your changes.
Longitudinal survey research
Scheduling of events and surveys
REDCap allows you to schedule when surveys are sent to participant groups or individual participants. First, on the Project Setup page, enable the options for "Use surveys in this project", "Longitudinal data collection with defined events", "Repeatable instruments", and the "Scheduling module".
Next, define events on the "Define my events" page. You can access this page from the Project Setup view after enabling longitudinal data collection with defined events.
Events are separate occurrences that start and end during the project. They can be measurement sessions, sample collection points, or segments of a longitudinal survey. Create a new event by giving it a name and an offset value. The offset value determines how many days after the previous event the next event will occur. Create a unique event for each survey you want to send.
Next, designate the desired survey instrument for each event on the "Designate instruments for my events"- page. Here, you specify which instruments will be implemented for each event. Click "Begin Editing" and select the desired instrument for the relevant days.
Enable the instruments as surveys in the Online Designer, if you haven’t done so already.
If needed, customize the survey appearance and functionality in the Survey Settings menu, and save your changes. Then, in the Online Designer, set up automatic invitations for each survey instrument.
In the "Automatic invitations"- menu, define how invitations will be sent for each event. Finally, in Step 4, click "Active" and save your changes. Configure the desired invitation settings for each event and survey instrument in the same way.
Form survey
In addition to surveys, REDCap can be used to collect data and compile databases by feeding data directly into REDCap. The data (records) of an individual respondent can be entered manually, or the data can be imported using the Data Import tool. The form functions are well suited to survey designs where data is collected from subjects, for example by measurement, sampling or observation.
There are two ways to input participant data: automatic numbering and manually creating a unique identifier (ID) for each record. You can adjust the input method in the "Enable optional modules and customizations" section within the Project Setup.
