The COVID-19 pandemic has fundamentally changed how Canadians access health care. Although it is undeniable that the rapid adoption of virtual care has played a critical role in reducing viral transmission, the gap in equitable access to virtual care remains pervasive for Canada’s aging and ethnocultural minority communities. Existing virtual care solutions are designed for the English-speaking, health-literate, and tech-savvy patient population, excluding older ethnic adults who often do not see themselves reflected in these identities. In acknowledging the permanency of virtual care brought on by the pandemic, we have a collective responsibility to co-design new models that serve our older ethnic patients who have been historically marginalized by the status quo. Building on existing foundations of caregiving within ethnocultural minority communities, one viable strategy to realize culturally equitable virtual care may be to engage the highly motivated and skilled family caregivers of older ethnic adults as partners in the technology-mediated management of their chronic disease. The time is now to build a model of shared virtual care that embraces Canada’s diverse cultures, while also providing its older ethnic adults with access to health innovations in partnership with equally invested family caregivers who have their health at heart.
Background The demand for health services to meet the chronic health needs of the aging population is significant and remains unmet because of the limited supply of clinical resources. Specifically, in managing heart failure (HF), digital health sought to address this gap during the COVID-19 pandemic but highlighted an access issue for those who could not use technology-mediated health care services without the support of their informal caregivers (ICs). The complexity of managing HF symptoms and recurrent exacerbations requires many patients to comanage their illness with their ICs in a care dyad, working together to optimize patient outcomes and health-related quality of life. However, most HF programs have missed the opportunity to consider the dyadic perspective despite interdependencies on HF outcomes. Objective This study aims to characterize the value of technology in supporting caregiving for individuals living with HF. Methods Motivated by an observed unique pattern of engagement in patients enrolled in our Medly HF management program at the Peter Munk Cardiac Centre in Toronto, Canada, we conducted 20 semistructured interviews with a convenience sample of ICs. All interviews were analyzed using the iterative refinement of a codeveloped codebook. The team maintained reflexivity journals to reflect the impact of their positionality on their coding. Themes were first derived deductively using HF typologies (patient-oriented dyads, caregiver-oriented dyads, and collaboratively oriented dyads) and then inductively refined and recategorized based on concepts from the van Houtven et al framework. Results We believe that there is a need to formally and intentionally expand HF technologies to include dyadic needs and goals. We suggest defining 3 opportunities in which value can be added to technological design. First, identify how technology may be leveraged to increase psychological bandwidth by reducing uncertainty and providing peace of mind. We found that actionable feedback was highly desired by both partners. Second, develop technology that can serve as a member of the dyad’s support system. In our experience, automated prompts for patients to take measurements can mimic the support typically provided by ICs and ease their workload. Third, consider how technology can mitigate the dyad’s clinical knowledge requirements and learning curve. Our approach includes real-time actionable feedback paired with a human-in-the-loop, nurse-led model of care. Conclusions Our findings identified a need to focus on improving the dyadic experience as a whole by building IC functionality into digital health self-management interventions. Through a shared model of care that supports the role of the patient in their own HF management, includes ICs to expand and enhance the patient’s capacity to care, and acknowledges the need of ICs to care for themselves, we anticipate improved outcomes for both partners.
Background Comprehensive models of survivorship care are necessary to improve access to and coordination of care. New models of care provide the opportunity to address the complexity of physical and psychosocial problems and long-term health needs experienced by patients following cancer treatment. Objective This paper presents our expert-informed, rules-based survivorship algorithm to build a nurse-led model of survivorship care to support men living with prostate cancer (PCa). The algorithm is called No Evidence of Disease (Ned) and supports timelier decision-making, enhanced safety, and continuity of care. Methods An initial rule set was developed and refined through working groups with clinical experts across Canada (eg, nurse experts, physician experts, and scientists; n=20), and patient partners (n=3). Algorithm priorities were defined through a multidisciplinary consensus meeting with clinical nurse specialists, nurse scientists, nurse practitioners, urologic oncologists, urologists, and radiation oncologists (n=17). The system was refined and validated using the nominal group technique. Results Four levels of alert classification were established, initiated by responses on the Expanded Prostate Cancer Index Composite for Clinical Practice survey, and mediated by changes in minimal clinically important different alert thresholds, alert history, and clinical urgency with patient autonomy influencing clinical acuity. Patient autonomy was supported through tailored education as a first line of response, and alert escalation depending on a patient-initiated request for a nurse consultation. Conclusions The Ned algorithm is positioned to facilitate PCa nurse-led care models with a high nurse-to-patient ratio. This novel expert-informed PCa survivorship care algorithm contains a defined escalation pathway for clinically urgent symptoms while honoring patient preference. Though further validation is required through a pragmatic trial, we anticipate the Ned algorithm will support timelier decision-making and enhance continuity of care through the automation of more frequent automated checkpoints, while empowering patients to self-manage their symptoms more effectively than standard care. International Registered Report Identifier (IRRID) RR2-10.1136/bmjopen-2020-045806
UNSTRUCTURED The COVID-19 pandemic has fundamentally changed how Canadians access healthcare. Although it is undeniable that the rapid adoption of virtual care has played a critical role in reducing viral transmission, the gap in equitable access to virtual care remains pervasive for Canada’s aging and ethnocultural minority communities. Existing virtual care solutions are designed for the English-speaking, health-literate, and tech-savvy patient population, excluding older ethnic adults who often do not see themselves reflected in these identities. In acknowledging the permanency of virtual care brought on by the pandemic, we have a collective responsibility to co-design new models that serve our older ethnic patients who have been historically marginalized by the status quo. Building on existing foundations of caregiving within ethnocultural minority communities, one viable strategy to realize culturally equitable virtual care may be to engage the highly motivated and skilled family caregivers of older ethnic adults as partners in the technology-mediated management of their chronic disease. The time is now to build a model of shared virtual care that embraces Canada’s diverse cultures, while also providing its older ethnic adults with access to health innovations in partnership with equally invested family caregivers who have their health at heart.
BACKGROUND The Covid-19 pandemic forced the spread of digital health to address limited clinical resources for managing chronic health conditions. At the same time, it illuminated the population of older patients who could not access this care without an informal caregiver (IC) due to accessibility, technological literacy, or English proficiency concerns. For patients with heart failure, this rapid transition to digital health further exacerbated the demand on ICs and pushed Canadians towards a dyadic care model in the management of chronic diseases, where patients and ICs work to manage care together. Our previous work identified an opportunity to improve this dyadic HF experience through a shared model of dyadic digital health. We call this alternative model of care “Caretown,” which empowers ICs to concurrently expand the patient’s ability for self-care while acknowledging IC needs to facilitate a greater level of support. OBJECTIVE The aim of this viewpoint paper is to present the systematic design and development of the Caretown dyadic management module.While heart failure is the outlined use-case, we report on disease agnostic features. METHODS To build the Caretown model, we 1) leveraged the Knowledge to Action (KTA) framework for its ability to translate knowledge into action, and 2) borrowed the Google Sprint from industry titans to quickly “solve big problems and test new ideas” which has been effective in the medical and digital health space. Specifically, we blended these two concepts into a new framework called the “KTA Sprint”. RESULTS Six core disease-agnostic features were identified to support ICs in care dyads to provide more effective care and to capitalize on the synergistic benefits of dyadic care. These six features were designed to be customizable to suit the patient’s condition, were informed by stakeholder and task analysis, corroborated with literature, and vetted through user needs assessment interviews. These features include (1) Live Reports to enhance data sharing and facilitate appropriate IC support; (2) Care Cards to enhance guidance on the caregiving role; (3) Direct Messaging to dissolve the disconnect across the circle of care; (4) Medication Wallet to improve guidance on managing complex medication regimens; (5) Medical Events Timeline to improve and consolidate management and organization; and (6) Caregiver Resources to provide disease-specific education and support their self-care. CONCLUSIONS These disease-agnostic features were designed to address informal caregiver needs in supporting their care partner. We anticipate the implementation of these features will empower a shared model of care for chronic disease management through digital health, and will improve outcomes for care dyads.
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