Data Repository- Organizations & Partners Consent, Demographics & Baseline Survey

1.Human rights of older adults

Project title: Development, implementation, and evaluation of a bilingual rights-based data repository: An educational intervention to improve knowledge and human rights of older adults

University of Regina Ethics approval #841

Research team:
Dr. Natasha Gallant (University of Regina) - Natasha.Gallant@uregina.ca or (306) 585-4219
Kelsey Rusk (Centre for Innovation and Research in Aging - CIRA) - krusk@ycc-cira.ca or (506) 444-3880 ext 2540
Norma Chinho (CIRA) - nchinho@ycc-cira.ca, 506) 444-3880 ext 2562
Venezya Thorsteinson (University of Regina) - venezya.thorsteinson@uregina.ca
Molly Schriver (CIRA) - mschriver@ycc-cira.ca or 506-444-3880 ext 2561
Amelie Brutinel (Seniors Advocate of New Brunswick) - Amelie.Brutinel@gnb.ca

Ethics Approval
This study has been reviewed by University of Regina Research Ethics Board (REB). If you have any questions about your rights as a research participant or the Investigator’s responsibilities, you may contact the University of Regina Research Ethics Board by writing to research.ethics@uregina.ca, or calling 306-585-4775 where responses can be expected within 1 business day. If you have any study-related comments, complaints or concerns, you should first contact the study investigator. Please call the University of Regina REB if you need to speak to a person independent from the Investigator and the research staff, and/or if the Investigator and the research staff could not be reached.

What is the purpose of this study?
You are being invited to participate in a research project about Human rights of older adults. The project is led by the Centre for Innovation and Research in Aging (CIRA) from Fredericton, New Brunswick and the Centre on Aging and Health at the (CAH) University of Regina. Before agreeing to take part, we will explain your rights as a participant and clarify any questions you may have. Human Rights of Older Adults is building a bilingual human rights indicator database. A human rights indicator database is a website with a collection of up-to-date information that helps us to understand how well older adults' basic rights are being respected and protected across Canada. Similar to a report card for older adults' human rights, where we can see if everyone is being treated fairly and equally. Through understanding the current status of human rights knowledge on aging for older adults, we hope to improve knowledge access and empower groups and individuals. This project is funded by The Public Health Agency of Canada Intersectoral Action Fund.
1.What will participation look like?
Participation includes an interview and 1 -3 brief surveys. The survey will take approximately 15-30 minutes each to complete and the interview could take 30-90 minutes. We may also ask you to complete a brief feedback survey to evaluate the final database we create. The feedback survey will be sent 3-6 months after your interview.

Is my feedback confidential?
We will be collecting feedback from you about the data and resources we find and create. We will also be collecting a few demographic questions about your position and information on your organization (how many clients, location etc.). All this information is kept confidential by the CIRA research team. Your decision to participate in this study is voluntary and you can decide to leave the study at any time. You do not have to answer any questions that you are uncomfortable with. You can have your personal information removed from the study if you decide to drop out. The focus groups will be audio recorded and transcribed, but the researchers will remove any personally identifiable information and your name will not be associated with any of the content. After the study period, the transcripts and recordings will be deleted. If the researchers would like to use your feedback in new training materials, they will ask your permission.

What are the risks and benefits?
This is a low-risk study. We hope the Older Person’s Human Rights Indicator Framework (OPRIF) will be beneficial to stakeholders in the aging, health, social, and legal sectors who work with older adults. The information and data collected from interviews and surveys will be used to improve and update the database. Additionally, this data may be published in academic papers, included in reports, or presented at conferences to share our findings and help others understand and address the basic human rights issues for older adults. Participants will not be directly identified in any research presentation. All data will be stored for seven years then permanently deleted. When it is time to destroy the data, electronic data will be permanently deleted.

Interview and survey platforms security and data protection
Microsoft Teams ensures data security with encryption at rest and in transit. Teams complies with various industry standards such as HIPAA, and it provides robust access controls and permissions management to safeguard user data and communications.

SurveyMonkey uses encryption to protect data in transit and at rest. It offers options to anonymize responses, ensuring respondent privacy. SurveyMonkey complies with international data protection regulations, ensuring high standards of data privacy and security.

OtterAI transcription service will be used to transcribe the interviews. Otter utilizes best practices to protect customers’ data and works with independent experts to verify its security measures, and has achieved SOC 2 Type 2 report against stringent standards. They work with an independent auditor to maintain a SOC 2 report, which objectively certifies their controls to ensure the continuous security of our customers' data.


Disclaimer:
The spirit of this study is to help us reflect on the state of human rights of older adults by shining a light on some of the ‘blind spots’ that we sometimes have but in a lighthearted and thought-provoking manner. Sometimes, being interviewed about the basic rights for older adults can make people feel uncomfortable or upset because it might show where problems or unfair treatment exist. This project is not meant to critique participants’ work,(Required.)
*Your contact info is collected for research purposes only, so we can schedule your follow-up surveys.
2.Your phone number (just the ten digits, no spaces)(Required.)
3.Your email address(Required.)
4.I would like a copy of the study results emailed / mailed to me. Email / address:(Required.)
5.By checking this box, I consent to have my anonymous information used in the online data repository.(Required.)
6.Do you consent to having publicly available documents produced by your organization, such as reports, publications, or advocacy materials, included on the bilingual human rights indicator database website for broader dissemination?

These documents will remain in their original form, attributed to your organization, and used solely to enhance access to existing knowledge on the human rights of older adults.(Required.)
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