More Information
PULSE at a glance
What is the PULSE Program?
PULSE is a program aimed at improving personalized cardiovascular care. PULSE collects information from patients and combines it with their electronic medical records. This data can then be used to understand how cardiovascular care can be tailored for individual patients!
What do PULSE participants do?
-
Provide consent for PULSE to access their medical record.
-
Fill out a medical history, symptoms and quality of life questionnaire when they first sign up – a follow-up is emailed shortly after with some more medical history and profile questions.
-
Fill out a symptom and quality of life update every 6-months and whenever they visit a cardiac clinic.
Can participants quit PULSE?
Yes. Participants can stop participating at any time by filling out the form at www.PulseClinicProgram.ca/withdraw. The only information needed is date of birth and Alberta Health Number (AHN). ​
Is there a benefit to joining?
After each health status update, PULSE generates a report. This report can be shown to the care team and may help them to make decisions that day.
​
In the future, this data can be used to personalize care - participants can opt in to learn about PULSE findings or opportunities to personalize their care!
Who can see my information?
Participation is confidential. All personal information (e.g., name, AHN, birthday) is removed from the data. This allows researchers to use PULSE data without knowing which person the data came from. Personal information can only be accessed by two groups: 1. The PULSE administrative team – they need this information so that questionnaire data can be matched to the correct medical record. This is automated and performed using a data pipeline, no one looks at individual records. 2. The research ethics board is allowed to audit PULSE operations to ensure that PULSE is compliant with ethics, University of Calgary and privacy policies. Again, the research ethics board will not be looking at individual records. Instead, they may check the PULSE participant list against what data has been requested from Alberta Health Services to ensure that PULSE is only collecting approved data.
Who can use my data and what for?
Research teams can submit data requests to the Libin Precision Medicine Initiative. Anonymized data can be released for Ethics Review Board and Alberta Health Services approved projects. PULSE projects will typically focus on developing clinical decision support tools and risk prediction models for improving and personalizing patient care. We expect the first tools or models to be developed over the next several years.
Ethics ID: REB22-0933