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Public-facing evaluation of the RESPECT predictive algorithm

You can help us improve as you complete the calculator.

We want to make sure our Elder Life calculator (we call it 'RESPECT') is as useful and valuable as possible to you and others who use this next. We have included a few extra questions about your experience using the Elder Life calculator that take about "X" mins to complete.

Agree and ContinueSkip StudyNo Thanks, Return To Home

Study Title: Public-facing evaluation of the RESPECT predictive algorithm

Principal Investigator: Dr. Douglas Manuel, Methodological and Implementation Research Program, Ottawa Hospital Research Institute

OHSN-REB Number: 20250209-01H

INTRODUCTION:

RESPECT is short for Risk Evaluation for Support: Predictions for Elder-life in the Community Tool for the End-of-Life. The RESPECT tool is a predictive algorithm that calculates an elderly person’s chance of survival (that is, how long they will live) based on responses to 5-25 questions such as what diseases they have and how difficult it is to care for themselves. The RESPECT tool was designed to support conversations about the care needs of frail older adults and to promote better planning for when end-of-life approaches. The RESPECT tool is currently available online (https://www.projectbiglife.ca/calculators/elder-life) for members of the public to access, but we know very little about the types of people who are using the tool (why are they using it, do they learn anything after using the tool, does the tool meet their needs?). This study is therefore seeking to survey people who access the tool online to learn more about their experiences using the tool. Findings from this study will help improve the design of the RESPECT tool to meet the needs of those seeking more information about end-of-life.


ARE THERE ANY CONFLICTS OF INTEREST?

There are no conflicts of interest to declare related to this study.  

WHAT WILL HAPPEN DURING THIS STUDY?
Your participation in this study will require the completion of a survey upon viewing the RESPECT tool. The survey asks questions about your experiences using the tool. This whole process – viewing the RESPECT tool and then answering the survey - should take approximately 10 minutes of your time. The information you provide is for research purposes only. Some of the questions are personal. You can choose not to answer questions if you wish.

VOLUNTARY PARTICIPATION AND WITHDRAWAL:
You do not have to be in this study if you do not want to be. You can choose to end your participation in this research (called withdrawal) at any time without having to provide a reason.

The survey is anonymous. This means that you can withdraw from participating at any time while completing the survey simply by closing your browser; however, once the completed survey has been submitted to the study team, it will not be possible to withdraw your information.  Any information recorded before you withdraw will be used by the researchers for the purposes of the study, but no information will be collected after you withdraw your permission.

RISKS AND/OR BENEFITS:  

Participation involves minimal risk to you. Some of the questions may however make you feel uncomfortable.  

PRIVACY/CONFIDENTIALITY:

The survey is anonymous which means that your answers will not be linked to you in any way. If the results of this study are published, your identity will remain anonymous. It is expected that the information collected during this study will be used to improve the predictive algorithms as part of Project Big Life.

Your anonymous data from this study may be used for other research purposes. If your study data is shared with other researchers, no information that links your study data directly to you will be available. Even though the risk of identifying you from the study data is very small, it can never be completely eliminated.

COST AND/OR PAYMENT:
You will not be paid for being in this study, nor will there be any cost to you.

RIGHTS OF PARTICIPANTS:

You have the right to be informed of the results of this study once the entire study is complete. If you would like to be informed of the results of this study, please contact the research team. Your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected.

QUESTIONS:
If you have any questions about taking part in this study, you may contact Dr. Doug Manuel at dmanuel@ohri.ca ; 613-798-5555 x19108.

If you have questions about your rights as a participant or about ethical issues related to this study, you can talk to someone who is not involved in the study at all. Please contact The Ottawa Health Science Network Research Ethics Board, Chairperson at 613-798-5555 extension 16719 or rebadministration@ohri.ca.  

CONSENT:

By completing this research process – viewing the RESPECT tool and then answering the survey - your consent to participate is implied.

Study approved by the Ottawa Health Science Network Research Ethics Board.

[For a copy of this study consent form, please click here to download.]

PDF link: Public-facing evaluation of RESPECT_Consent.pdf

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Project Big Life

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