Advanced Planning for Online Accounts and Data

Advanced Planning for Online Accounts and Data of Patients With Metastatic Cancer

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

Study Overview

• Status: Recruiting
• Conditions: Metastatic Cancer; Terminal Cancer
• Intervention / Treatment: Other: Post-Mortem Plan

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.

• Study Type: Interventional
• Enrollment (Estimated): 300
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Jed Brubaker; Phone Number: 3037355546; Email: jed.brubaker@colorado.edu

Study Locations

• United States
  • Colorado
    • Aurora, Colorado, United States, 80045
      • Recruiting
      • University of Colorado Health
      • Contact: Jed Brubaker; Phone Number: 303-735-5546; Email: jed.brubaker@colorado.edu
      • Contact: Stacy Fischer; Phone Number: 3037246353; Email: stacy.fischer@cuanschutz.edu

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years to 100 years (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes

Description

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:

-

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm

Intervention / Treatment

Other: 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.

Other: 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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Determine best practices for supporting participants	The investigator will use interviews to develop a broad understanding of the terminal patient, the network, and the relevant accounts and data. During interviews with the terminally ill participant, the study team will seek to develop an understanding of the participant as a person, the network and its key members, and establish a shared set of expectations. The investigator anticipates members of the patient's social network will be involved during this interview. Through personal interviews, the study team will identify end-of-life needs and wishes. The study team 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 them. 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.).	5 years

Collaborators and Investigators

• Sponsor: University of Colorado, Denver
• Collaborators: U.S. National Science Foundation
• Investigators: Principal Investigator: Jed Brubaker, University of Colorado, Boulder

Study record dates

Study Major Dates

• Study Start (Actual): September 17, 2021
• Primary Completion (Estimated): May 1, 2026
• Study Completion (Estimated): May 1, 2027

Study Registration Dates

• First Submitted: December 27, 2021
• First Submitted That Met QC Criteria: February 2, 2022
• First Posted (Actual): February 3, 2022

Study Record Updates

• Last Update Posted (Actual): March 15, 2024
• Last Update Submitted That Met QC Criteria: March 13, 2024
• Last Verified: March 1, 2024

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Pathologic Processes; Neoplasms; Neoplastic Processes; Neoplasm Metastasis
• Other Study ID Numbers: 21-3375.cc

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO
• IPD Plan Description: IPD will not be shared, in accordance with IRB and ethics requirements.

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No