The longitudinal data collection process allows for gathering ongoing data for each patient at different points in time, through surveys. This process is crucial for tracking changes and updates in the patients' condition, genetic information, and treatments over time.
Workflow
Select a Subset of Patients
An administrator selects a target group of patients from the master database. This selection is based on certain criteria such as patient demographics, mutation status, or previous survey responses.
Generate Private Links for Surveys
A process generates individual tokens for each contact-patient pair.
Each token is linked to a specific survey and patient, ensuring that the survey is unique and can only be submitted once by the contact.
These tokens are stored in the Tokens table and are associated with both contacts and patients.
Send Email Notifications
Automated emails are sent to the selected contacts.
Each email contains a unique survey link generated by the token system, which directs the contact to the survey page.
Receive and Process Survey Responses
Once the survey is completed, the response is stored with the corresponding token.
The survey responses are linked to the correct patient in the master database, ensuring that longitudinal data is properly maintained for each patient.
This allows multiple surveys to be associated with the same patient, forming a longitudinal data set.
Data Association
Patient Surveys: Each patient can have multiple surveys associated with them over time, providing longitudinal data.
Token System: Ensures that each response is uniquely tied to a patient-contact pair, avoiding duplicate submissions or data inconsistencies.