Advanced Planning for Online Accounts and Data

NCT ID: NCT05222308

Last Updated: 2025-07-08

Basic Information

• Recruitment Status: WITHDRAWN
• Clinical Phase: NA
• Study Classification: INTERVENTIONAL
• Study Start Date: 2021-09-17
• Study Completion Date: 2024-09-27

Brief Summary

The proposed research consists of engagements with terminal cancer patients and their friends and family as they engage in end-of-life planning.

Detailed Description

Through personal interviews, the Investigator will identify end-of-life needs/wishes. The Investigator will engage in value elicitation activities to identify both what the values are that should inform the work with the participant, as well as the source of values and the agency people have in relationship to the participant.

In many cases, participants will have already engaged in versions of these conversations focused on other domains in their life (e.g., finances, funerary wishes, etc.). As such, the interviews will also identify how wishes related to online accounts and data align with wishes from other domains.

Based on needs identified during the previous stage, the investigators will support patients and networks in articulating a set of requests and preferences, and work with participants to develop and implement a plan to fulfill these requests. Throughout this stage the investigator's focus is on how participants' high-level wishes can be translated into specific technical practices and features, a challenge identified in prior work. Focusing on this translation will allow the study team to develop post-mortem plans for the participants while also systematically identifying types of breakdowns that can be addressed in future design research. The study team anticipate many requests will require the study team to investigate technical and policy feasibility. For example, a request that next of kin be able to have full access to an account may not be supported by that platform, requiring the study team to consider workarounds and their viability over time. The study team will ideate on a variety of possible solutions, presenting viable options to participants. For each request, the study team will document the details including challenges to fulfilling the request, possible solutions, and the fragility of those solutions should there be changes over time to technology (e.g., passwords being replaced by 2-factor authentication) or social circumstances (e.g., an individual's willingness to perform a specific action). This documentation will both help aid the participant in making choices, while also allowing the study team to holistically identify common shortcomings in technology design related to post-mortem planning. Based on the articulated requests, the study team will develop and present a set of draft plans to the participant and their network and discuss the merits of each and potential trade-offs. The study team will then support the participant and network as a plan is selected, soliciting feedback from the participants about each option.

Next, participants and the participants' networks will need to perform some amount of work to make preparations and support the plan (e.g., collecting usernames and passwords, adding instructions to a will, setting up a Legacy Contact on Facebook or a designated contact on google). The study team will support the participant through this process, taking note of tasks that are confusing, technically difficult or impossible, or especially laborious. Engagement during this process will allow participants to make the best possible preparation, while allowing the study team to note problems that should be addressed in our Stage 1 and 2 processes, the specific participant's plan, or with post-mortem technology more broadly.

After having completed post-mortem preparations, the study team will continue to support participants with changes the participant may wish to make to the plan as social and technical circumstances evolve. The study team will check in with participants at regular intervals based on their preferences and guidance from their oncologist. Additionally, participants can contact the study team at any time with questions or to request help.

Conditions

Terminal Cancer; Metastatic Cancer

Study Design

• Allocation Method: NA
• Intervention Model: SINGLE_GROUP
• Primary Study Purpose: SUPPORTIVE_CARE
• Blinding Strategy: NONE

Study Groups

Post-Mortem Plan

Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience.

Group Type: OTHER

Post-Mortem Plan

Intervention Type: OTHER

Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience.

Interventions

Post-Mortem Plan

Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience.

Intervention Type: OTHER

Eligibility Criteria

Inclusion Criteria

• Life-limited adults diagnosed with metastatic cancer who have online accounts and data.
• Adult family/loved ones of the diagnosed adult who are willing to participate in planning activities.

Exclusion Criteria

-

• Minimum Eligible Age: 18 Years
• Maximum Eligible Age: 100 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

U.S. National Science Foundation

FED

Sponsor Role: collaborator

University of Colorado, Denver

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Jed Brubaker

Role: PRINCIPAL_INVESTIGATOR

University of Colorado, Boulder

Other Identifiers

21-3375.cc

Identifier Type: -

Identifier Source: org_study_id