Informed Consent

Title of research study:Evaluating End-of-Life Technology Needs
IRB Protocol Number:24-0660
Investigator:Jed R. Brubaker, Ph.D.
Sponsor:National Science Foundation
Thank you for supporting our research.

We appreciate your participation in our research efforts to improve how technology is designed for the end-of-life. Below you will find details about our research along with your rights as a participant.Ìý

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The purpose of the research is to learn more about how to support individuals in managing their online accounts and data or those of their loved ones after they have died. During this study, individuals will work with members of the research team to develop, implement, and carry out a customized plan for the digital affairs of themselves or a loved one. We expect that you will be in this research study for the period of time it takes to address your request. This may be as short as a few days or as long as a few months. We anticipate a total of 1000 people will participate in the study. Whether or not you take part in this research is your choice. You can leave the research at any time and it will not be held against you.

What to Expect

Your participation will consist of:

  • A series of emails during which the research team will ask you for clarifying information about your needs and provide support with your request
  • Optional video interviews (approximately 30 minutes) as needed to discuss your needs and provide support
  • A short feedback survey asking for demographic information and your thoughts on your experience (5-10 minutes)
  • Optional monthly check-ins over email that ask how your situation has unfolded and if there are other ways we can support you. These check-ins can be discontinued at any point at your request.

We will only collect the data you provide to us. You only need to provide information you feel comfortable sharing and can skip any questions you do not want to answer.

Protecting your Information

Information obtained about you for this study will be kept confidential. The information from this research may be published for scientific purposes; however, your identity will be anonymized. All study data will be stored securely and only accessed by study staff.

Questions

If you have questions about the research, you can contact the Principal Investigator at digitallegacy @ colorado.edu.

If you have concerns or complaints about this research you can contact the CU Boulder IRB at (303) 735-3702 orÌýirbadmin@colorado.edu.