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Invitation to Participate: You are invited to participate in this research study which allows you to create your own personal learning page for cirrhosis and evaluate written and video based educational materials that have been developed for patients with cirrhosis and their caregivers.
Purpose of the Study: From this research we wish to learn how online educational materials (written materials and videos) impact patient and caregiver understanding and comfort with topics related to cirrhosis.
Participation: If you wish to participate in this study, you will be asked to enter your username, password, email and a few details about you (age, sex) and your liver disease (what liver related complications you have had before). Your name or physical location will never be requested of you. You will be taken to your own personal learning page where there will be several learning modules you can complete. Each of these modules has a short set of “pre-test” questions before the module and then a short set of “post-test” questions after the module. The surveys should take you approximately 5-10 minutes to complete. You do not have to answer any questions that you do not want to answer. Once you have completed the survey, please choose the “submit” button.
Will I be paid to be in the research?: At some points in the study, the study team may offer the opportunity to enter a draw for a $25 gift card for fully completing a pre and post test survey (1 in 20 chances of winning). At the bottom of this form you will be ask if you want to be part of the raffle. If you consent to this, we will contact you by email if you win.
Benefits: It is possible that you may receive no benefit or that you may benefit from learning more about cirrhosis. The feedback you provide will be used to make improvements to the learning materials so they can help other patients and caregivers with cirrhosis.
Risks: None anticipated.
Confidentiality: In order to provide you with your own personal learning page and keep track of the teaching that you have carried out, you will be asked to provide a username and email. The information that you will share will remain strictly confidential and will be used solely for the purposes of this research. All efforts will be made to keep your information as secure as possible, but as this interaction happens online, there is always a risk of the information being exposed. The only people who will have access to the research data are the investigators listed above and their research assistants. To increase security, each week the data from the website will downloaded, removed and stored on a password protected computer in the Department of Medicine at the University of Alberta. Your answers to open-ended questions may be used word-for-word in presentations and publications but you will not be identified. Results will be published in pooled (aggregate) format.
Data Storage: Electronic copies of the survey will be encrypted and stored on a password protected computer in the department of Medicine at the University of Alberta.
Voluntary Participation: You are under no obligation to participate and if you choose to participate, you may refuse to answer questions that you do not want to answer. If you choose to have your data withdrawn from the study, this will be possible only before the data are analyzed. You can email the study email at [email protected] and provide them with the email you enrolled with if you want to have your study data removed.
Contact Information: If you have any questions or require more information about the study itself, you may contact the study email at [email protected]
The plan for this study has been reviewed by a Research Ethics Board at the University of Alberta. If you have any questions regarding your rights as a research participant or how the research is being conducted you may contact the Research Ethics Office at 780-492-2615.
Completion and submission of the survey means your consent to participate.