Dylan Thomas Doyle

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.

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. To guide future research in determining priority areas for technology intervention, we synthesized our findings into a conceptual model that visualizes the tasks of providers in value elicitation. Comparing our model with previous models focused on patient and caregiver tasks, we found that provider perspectives introduce additional tasks in value elicitation that warrant attention: the creation, member-checking, and formal documentation of care plans by providers. 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.

Large language models (LLMs) are the new hot trend being rapidly integrated into products and services—often, in chatbots. LLM-powered chatbots are expected to respond to any number of topics, including topics central to gender identity . In light of rising anti-trans discourse, we examined how two popular LLMs responded to real-world English-language questions about trans identity taken from Quora. We employed reflexive analysis that centered our situated knowledges of the trans community. We found that LLMs return pro-trans responses, even when presented with highly transphobic user prompts. While we also found highly transphobic LLM responses, we found that anti-trans sentiment in LLMs was often subtle, requiring a deep positional understanding from diverse trans stakeholders to interpret. Based on these findings, we recommend diverging from current “value-neutral” approaches that validate transphobia by taking an “all sides” approach. We provide considerations for both the evaluation and design of LLMs that center positional expertise.

Though online platforms have begun to include support for end-of-life needs, their development has been piecemeal and varies from platform to platform. Recent social computing research has examined end-of-life support on social media platforms and platforms specifically designed for grief and remembrance. However, understanding the functional end-of-life support provided by a wider array of platforms is needed to identify the most urgent design priorities beyond social media and remembrance-specific platforms. In this study, we present the results of a large-scale, multi-platform analysis of end-of-life support, summarizing the current state and identifying gaps as of April 2023. This study helps identify priorities to guide platform design and future research by identifying the current state of existing end-of-life support and gaps in that support.

100% of us will die. Meanwhile, each of us creates more and more online accounts and data throughout our lives than ever before. Although online accounts and data must increasingly be integrated with our end-of-life planning practices, that integration has been slow. Inventory-based data planning approaches recently developed by legal firms and industry players show promise in providing support. However, these approaches are still largely focused on planning for financial assets like online bank accounts. It is unclear if these approaches address the deeper human-centered needs, such as digital legacy. To imagine new approaches for end-of-life planning that account for emerging social-technical needs, this dissertation asks: How might social computing researchers and practitioners design more effective approaches for end-of-life data planning that can holistically account for human factors such as digital legacy?

Access to mortality data is critical for researchers for various reasons, including the development of life-saving medical interventions. However, high-quality mortality data is typically unavailable for researchers to access in a timely manner due to bottlenecks and inefficiencies in the coordination of managing mortality data across a vast information ecosystem. To identify opportunities to improve access to mortality data, we conducted a qualitative interview study with 20 experts with direct knowledge and experience with mortality data systems. From these interviews, we mapped the mortality data ecosystem and found that policy constraints are the main underlying cause of bottlenecks and inefficiencies. We argue that policy intervention is required to optimize the coordination of mortality data between databases and between organizations. To support researcher access to mortality data, we present guiding principles for designers seeking to improve the mortality data ecosystem. These principles contribute to CSCW scholarship focused on the challenges of coordination across large information ecosystems and the tradeoffs between technology and policy when designing such systems.