Sarina Roslyn Isenberg

Context: Arts‐based knowledge mobilisation (ABKM) is a powerful means of interpreting and communicating health services research, centreing experiential, iterative, and reflective knowledge rooted in co‐creation. We developed a research‐to‐public‐to‐research feedback loop methodology extending beyond existing ABKM practices and our previous research‐to‐public methodology, creating a novel bidirectional epistemic process wherein meaning making occurs from research to public and from public to research. This approach produces knowledge that is rich, contextually grounded, and otherwise potentially inaccessible through conventional research. Objectives: We present a case study documenting the first application of the feedback loop, with the aim of advancing and refining the methodological framework by: sharing quantitative findings with the public and eliciting public engagement via a design installation, and levering engagement to inform subsequent qualitative research. Methods: Using the design‐driven research‐to‐public‐to‐research feedback loop, we developed a participatory design installation focused on end‐of‐life care. Within an overarching mixed‐methods sequential study, we leveraged design and health services methods to: develop design principles; select installation aims and concept; prototype, refine, and iterate the design; and conduct descriptive analysis of installation outputs. Results: Borrowing characteristics of a classic diner, the installation entitled The Terminal Diner , invited individuals to complete orders for their desired end‐of‐life healthcare experience or leave reviews drawn from lived experience with a deceased loved one's end‐of‐life journey. The installation disseminated quantitative findings and engaged the general public in contemplating and co‐creating around the subject of death—outputs of which were used to inform subsequent qualitative research, while recruiting an interested audience as research participants. Conclusion: This study presents an innovative extension of our previous research‐to‐public methodology, representing a paradigmatic shift towards creative knowledge exchange and bidirectional meaning making within health services research. Patient Public Contribution: The public's role as co‐creators is foundational to the research‐to‐public‐to‐research feedback loop methodology. Those with lived experience—bereaved caregivers and patient partners—were also embedded throughout both the research and design processes, ensuring accessibility, relevance, and emotional resonance. Blending personal knowledge and public perspective, The Terminal Diner foregrounded the essential role of patient and public contributions in co‐creating meaningful, responsive, and inclusive health services research.

Background: Continuity of care (COC) measurements that reflect relational continuity have been used as quality indicators, yet their applicability near the end of life may be limited. Modified continuity indices—UPC-Team (Usual Provider of Care) and BB-Team (Bice-Boxerman)—were developed to reflect escalating care needs and capture associations with patient-centered outcomes. Objectives: To measure associations between the modified COC indices, UPC-Team, and BB-Team during the last year of life and end-of-life (EOL) health care outcomes. Methods: Retrospective cohort study of adults who died between January 1, 2018, and December 31, 2022, with advanced chronic obstructive pulmonary disease and/or heart failure prevalent ≥2 years before death, using health administrative data from Ontario, Canada. Multivariate regressions measured associations between the indices and days spent in community during the last 30 and 14 days of life, and place of death. Results: Among 175,323 included individuals (median age at death=80; 55.4% male), the median number of community days was 23 and 10 in the last 30 and 14 days of life; 56.5% died in a health care institution. Higher UPC-Team and BB-Team scores were associated with increased odds of institutional deaths and fewer community days. Conclusions: Higher continuity scores were associated with increased odds of institutional death and fewer days spent in the community, suggesting limited utility of these modified indices in predicting favorable EOL health care outcomes. Findings highlight the need for future research to incorporate all aspects of continuity (ie, relational, informational, and management) to better capture care coordination in this context.

Background: Approaches to measuring continuity of care are underdeveloped for the end-of-life context, yet important for understanding the quality of end-of-life care. Objectives: Our objective was to develop a grounded theory of continuity of care at end-of-life through the distillation and synthesis of interviews with bereaved family caregivers, which focused on perceptions and experiences of continuity of care at end-of-life. Design: This qualitative study is phase III of a four-phase mixed-methods sequential explanatory study with the aim of determining which aspects of continuity of care matter most to patients and family caregivers and, accordingly, to develop a novel continuity of care index. Methods: Family caregivers completed one 60-min audio-recorded semi-structured virtual interview. Interview questions explored perceptions and experiences through four categories of questions: Patients’ end-of-life experiences, family caregivers’ desires for end-of-life care, family caregivers’ perceptions of prior quantitative findings, and patients’ and family caregivers’ experiences of continuity of care at end-of-life. Results: Twenty-one family caregivers completed interviews; 33% were aged 19–44, 90% identified as women, 85% lived in urban settings, and 19% identified as a visible minority. Our theory focuses on patterns of continuity and discontinuity of care at end-of-life. Following Corbin and Strauss’ grounded theory method, we identified causes, contextual/intervening conditions, strategies, and consequences. Causes included health-human resource supply and system integration; conditions included tension between preferences and system capacity, and personal resources. Strategies involved aligning care with cultural or religious considerations, identifying a single point of contact, and delivering information appropriately. Consequences included patients and caregivers feeling educated and prepared, a comprehensive approach to care, and the provision of high-quality, consistent care. Conclusion: Combined with prior work, these findings will inform a continuity index for use as a system-level end-of-life care indicator.

Background: For patients who are seriously ill, conversations about prognosis, values, and goals can improve person-centered care; however, these conversations do not occur consistently. Objective: We aimed to develop an online, interactive goals-of-care discussion priming tool called MyCare to facilitate conversations about patient goals among physicians, patients, and family members. Our objective was to determine the feasibility, acceptability, and usability of MyCare for patients who are seriously ill in hospitals. Methods: We conducted a mixed methods study on internal medicine wards with patients who were seriously ill at 2 hospitals. Participants completed MyCare with a research assistant in their hospital room, and their responses were sent to their attending physician team. Patients, family members, and physicians participated in semistructured interviews to assess advance care planning engagement, usability, and acceptability. Patients also completed the System Usability Scale, the eHealth literacy scale, and survey questions about acceptability. Results: Patients took a median time of 32 (IQR 21-43) minutes to complete MyCare, with a range of 12 to 101 minutes. The mean eHealth literacy score was 56 out of 100. In total, 19 (76%) out of 25 patients indicated that MyCare helped them think about and understand what was most important to them, and 16 (64%) stated that MyCare helped them think about the type of care they would want if their illness progressed. The mean advance care planning engagement scores on a 5-point scale before and after MyCare were 4.11 (SD 0.77) and 4.20 (SD 0.74), respectively (mean difference 0.09, 95% CI –0.08 to 0.34; P=.22). After completing MyCare, 16% (4/25) of the patients reported feeling more prepared to talk to their medical decision-maker about the type of care they would want if they were very sick or near the end of life, and none felt less prepared. The most useful elements for patients were (1) clarifying goals and wishes for care, (2) identifying people who supported them, and (3) having a resource to facilitate conversations with their families. The most useful elements for physicians were patients’ prioritized values and goals. Conclusions: MyCare and similar tools will be more usable and acceptable if they are short and simple, focus on shared physician-patient priorities, and empower patients to advocate for their own goals.

Background: Although many people nearing the end of life wish to die at home, many patients experience re‐hospitalisation and hospital death. No end‐of‐life hospital‐to‐home interventions have been developed with patients and caregivers, and none have been tested in Canada. Through an iterative, participatory design approach, we codesigned an intervention in partnership with potential users of the final intervention: patients, family caregivers (FCs) and healthcare providers (HCPs). Objective: This study (ACEPATH) aimed to use a patient, FC and HCP engaged codesign process to continue to iterate and refine an intervention for transition from hospital to home in preparation for a pilot implementation. Methods: The codesign process consisted of: (1) Development of codesign workshop (CDW) materials; (2) CDWs with patients and/or their FCs, who iterated our team's previously developed checklists and reference materials; (3) Low‐fidelity prototyping sessions with hospital and community HCPs, who provided feedback on the low‐fidelity prototype, the guidebook (that combined the refined checklists and guides) and identified HCPs to facilitate the guidebook; and (4) High‐fidelity prototyping sessions entailed simulated interactions between an HCP and a patient/FC using the intervention, accompanied by discussion for feedback. Results: Participants identified several areas for refinement to enhance the relevance, clarity and acceptability of the guidebook intervention. Patients and FCs refined and organised questions into specific ‘moments’ that would be helpful for conversations with HCPs during their transition home. HCPs identified social workers, hospital home care coordinators and community home care coordinators as the best fit for facilitating completion of the guidebook at three moments (preparing to leave the hospital, immediately before discharge and getting comfortable at home). Conclusions: We successfully codesigned a guidebook for hospital‐to‐home transitions that was amenable to patients, FCs and HCPs. The next steps will entail piloting the guidebook to evaluate its acceptability, appropriateness, feasibility, costs and fidelity. Patient or Public Contribution: Patients and FCs who had lived/living experiences with hospital‐to‐home transitions near the end of life participated in codesign workshops and high‐fidelity prototyping sessions. We used codesign to ensure the final intervention was aligned with participants' needs and experiences and would hopefully improve aspects of the hospital‐to‐home transition that are important to them.

Background: People with heart failure (HF) are treated by multiple physician specialties as they approach the end of life (EOL). Patterns of physician involvement and health outcomes are not well understood. Elucidation of care patterns for this population may identify opportunities to minimize fragmentation and improve EOL continuity. This study describes categories of outpatient physician care patterns in the last year of life for people with HF and how EOL acute care use varies by category. Methods and Results: We conducted a retrospective cohort study of 65 625 adults with HF (median age, 83 [interquartile range, 74–89] years; 44.2% women; 86.9% urban residents) who died between 2017 and 2019 in Ontario, Canada, using health administrative data. Individuals were categorized according to different combinations of outpatient care providers in the last year of life: (1) primary care, palliative care, and relevant specialties (25.9%); (2) primary care and palliative care (5.4%); (3) primary care and relevant specialties (40.8%); (4) primary care (18.6%); and (5) specialty care (9.3%). Primary care physicians maintained involvement throughout the last year of life, while the proportion of monthly palliative care encounters increased near death. People who had palliative care involvement had the lowest rates of hospitalization and acute care deaths compared with those without palliative care involvement. Conclusions: People with HF receive most outpatient care from primary care physicians and palliative care physicians at the EOL. Multiple specialties are involved, highlighting the patients' medical complexity. Findings may help inform ways to measure relational continuity at the EOL for patients with HF.