Digital Legacy Clinic

This initiative addresses the challenges of managing digital legacies in end-of-life contexts. The clinic offers resources and personalized guidance to empower individuals and families in making informed decisions about their digital lives. Outcomes include practical tools, policies, and scholarly contributions shaping academic and industry approaches to digital legacy management.

Researchers

Jed Brubaker, Jack Manning, Joseph Trybala, Camille Butera, Dylan Thomas Doyle, Ella Krelovich

Learn more

Digital Legacy Clinic Website

CU Boulder Today Article

YouTube Video

Publications

What Is Most Important: The Tradeoffs of Structuring Value Documentation in Electronic Health Records Doyle, Dylan Thomas and Brubaker, Jed R.
Proceedings of the ACM on Human-Computer Interaction 10, CSCW: 1–34
- Abstract
- Reference
- BibTeX
- DOI: 10.1145/3817038
Advance Care Planning (ACP) enables patients to articulate the values that guide their end-of-life decisions, thereby improving health outcomes as they near death. However, Electronic Health Record (EHR) systems often fail to consistently support the documentation and transfer of these values across care settings. To investigate how ACP values are encoded, transmitted, and interpreted between hospital-based palliative care teams and hospice professionals, we conducted a narrative network analysis of twelve interviews with clinicians from both domains. Our analysis maps ACP value documentation workflows and reveals technical and organizational barriers – such as incompatible systems, unstructured or non-searchable formats, and mismatched assumptions about roles – that disrupt continuity of care. While more structured EHR fields may enhance usability, most value documentation remains under-structured, unstructured, or omitted, limiting searchability and interoperability. Building on prior CSCW research on healthcare coordination across distributed stakeholders, this study offers design recommendations for EHR systems and organizational practices to better support value documentation in clinical settings.

Factors Impacting the Abandonment and Closure of Accounts Butera, Camille and Trybala, Joseph J. and Brubaker, Jed R.
Companion of the 2026 Computer-Supported Cooperative Work and Social Computing

Reference
BibTeX
DOI: 10.1145/3785651.3831518

@inproceedings{buteraFactorsImpactingAbandonment2026,
  tags = {digital-legacy-clinic},
  author = {Butera, Camille and Trybala, Joseph J. and Brubaker, Jed R.},
  title = {Factors Impacting the Abandonment and Closure of Accounts},
  year = {2026},
  booktitle = {Companion of the 2026 Computer-Supported Cooperative Work and Social Computing},
  series = {CSCW Companion '26},
  pages = {218--223},
  publisher = {Association for Computing Machinery},
  address = {Salt Lake City, UT, USA},
  doi = {10.1145/3785651.3831518},
  url = {https://doi.org/10.1145/3785651.3831518},
  keywords = {account abandonment, account closure, non-use, digital identity}
}

Assessing Support for Mortality: An Environmental Scan of Online Platforms Doyle, Dylan Thomas and Paul, Casey and Brubaker, Jed R.
Proceedings of the ACM on Human-Computer Interaction 9, CSCW
- Abstract
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- BibTeX
- DOI: 10.1145/3710930
Though online platforms have begun to include support for end-of-life needs, their development has been piecemeal and varies from platform to platform. We present the results of a large-scale, multi-platform analysis of end-of-life support, summarizing the current state and identifying gaps. We find that online platforms support a narrow range of end-of-life needs, with many platforms providing no support or necessitating unsanctioned workarounds to meet those needs.
Navigating Value Elicitation: Insights from Palliative Care Providers Doyle, Dylan Thomas and Campbell, Colleen and Petterson, Adrian and Brubaker, Jed R.
Proceedings of the ACM on Human-Computer Interaction 9, CSCW: 1–26
- Abstract
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- BibTeX
- DOI: 10.1145/3757495
Healthcare providers play a crucial role in developing care plans for patients at the end of their lives. As value elicitation becomes increasingly integrated into advance care planning, digital tools have been proposed to support providers. However, the development of these tools has primarily focused on facilitating communication of values from patients to providers. To address providers’ specific needs and barriers, such as using values to create and manage medical care plans, we conducted an exploratory study capturing provider perspectives. Through interviews with 18 palliative care providers, we identified what they consider the typical value elicitation process, its associated challenges, and their visions for an ideal future process. Based on our findings, we argue that future work should focus on designing digital tools that support the provider-specific tasks of care plan creation and management to improve value elicitation.
"I Am So Overwhelmed I Don’t Know Where to Begin!" Towards Developing Relationship-Based and Values-Based End-of-Life Data Planning Approaches Doyle, Dylan Thomas and Brubaker, Jed R.
Proceedings of the CHI Conference on Human Factors in Computing Systems
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- DOI: 10.1145/3613904.3642250
To support people at the end of life as they create management plans for their assets, planning approaches like estate planning are increasingly considering data. HCI scholarship has argued that developing more effective planning approaches to support end-of-life data planning is important. However, empirical research is needed to evaluate specific approaches and identify design considerations. To support end-of-life data planning, this paper presents a qualitative study evaluating two approaches to co-designing end-of-life data plans with participants. We find that asset-first inventory-centric approaches, common in material estate planning, may be ineffective when making plans for data. In contrast, heavily facilitated, mission-driven, relationship-centric approaches were more effective. This study expands previous research by validating the importance of starting end-of-life data planning with relationships and values, and highlights collaborative facilitation as a critical part of successful data planning approaches.
Digital Legacy: A Systematic Literature Review Doyle, Dylan Thomas and Brubaker, Jed R.
Proc. ACM Hum.-Comput. Interact. 7, CSCW2
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- DOI: 10.1145/3610059
To more effectively support the dying and bereaved in end-of-life contexts, over the past two decades HCI and social computing scholars have sought to understand digital legacy. In this paper, we argue that it is time to take stock of digital legacy scholarship, examining what we know, what gaps remain, and what areas are imperative for future work. Through a Grounded Theory Literature Review, we identify four foci in digital legacy research to date: how identity is navigated in the passing of digital legacy, how digital legacies are engaged with, how digital legacies are put to rest, and how technology interfaces with offline legacy technologies. Based on our analysis, we present a model depicting how digital legacy research examines a lifecycle of data as it is passed down. This model identifies that digital legacy data moves through three stages: encoding, accessing, and dispossessing. The model illustrates gaps in current research and charts possible inflection points for future social computing research. Specifically, we highlight the importance of multi-user and multi-generational networks of people in end-of-life scenarios. Additionally, the model exhibits emerging theoretical findings and major concepts in the nascent field of digital legacy research.
Getting Your Facebook Affairs in Order: User Expectations in Post-mortem Profile Management Gach, Katie Z. and Brubaker, Jed R.
Proceedings of the ACM on Human-Computer Interaction 5, 1: Article 174
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- BibTeX
- DOI: 10.1145/3449248