Care partners and consumer health information technology: A framework to guide systems-level initiatives in support of digital health equity.

Introduction: Consumer-oriented health information technologies (CHIT) such as the patient portal have a growing role in care delivery redesign initiatives such as the Learning Health System. Care partners commonly navigate CHIT demands alongside persons with complex health and social needs, but their role is not well specified. Methods: We assemble evidence and concepts from the literature describing interpersonal communication, relational coordination theory, and systems-thinking to develop an integrative framework describing the care partner's role in applied CHIT innovations. Our framework describes pathways through which systematic engagement of the care partner affects longitudinal work processes and multi-level outcomes relevant to Learning Health Systems. Results: Our framework is grounded in relational coordination, an emerging theory for understanding the dynamics of coordinating work that emphasizes role-based relationships and communication, and the Systems Engineering Initiative for Patient Safety (SEIPS) model. Cross-cutting work systems geared toward explicit and purposeful support of the care partner role through CHIT may advance work processes by promoting frequent, timely, accurate, problem-solving communication, reinforced by shared goals, shared knowledge, and mutual respect between patients, care partners, and care team. We further contend that systematic engagement of the care partner in longitudinal work processes exerts beneficial effects on care delivery experiences and efficiencies at both individual and organizational levels. We discuss the utility of our framework through the lens of an illustrative case study involving patient portal-mediated pre-visit agenda setting. Conclusions: Our framework can be used to guide applied embedded CHIT interventions that support the care partner role and bring value to Learning Health Systems through advancing digital health equity, improving user experiences, and driving efficiencies through improved coordination within complex work systems.

Catalyzing dementia care through the learning health system and consumer health information technology.

To advance care for persons with Alzheimer's disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long-an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We discuss how stakeholder engagement in an ADRD LHS when embedding, adapting, and refining prototypes can ensure that products are viable when implemented. Finally, we highlight the promise of consumer-oriented health information technologies in supporting persons living with ADRD and their care partners and delivering embedded ADRD interventions at scale. We aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care.

Addressing the Home Care Shortage: Predictors of Willingness to Provide Paid Home Care in New York.

OBJECTIVES: To determine the prevalence and predictors of willingness to consider becoming a paid home care worker. DESIGN: Cross-sectional telephone-based survey study. SETTING AND PARTICIPANTS: 800 adult residents of New York State participating in the 2020 Empire State Poll, an annual survey conducted in English and Spanish using random-digit dialing. METHODS: Willingness to consider working as a paid home care worker was analyzed as the main outcome. Survey questions also involved demographics and unpaid caregiving experience. We used multinomial logistic regression to examine associations between participant characteristics and willingness to be a paid caregiver. RESULTS: Participants had a mean age of 47.7 years (95% CI 45.4-50.0). Demographic information included 51.1% female gender, 65.4% White race, 13.4% Black race, 6.4% Asian or Pacific Islander, 14.8% another race, 19.1% Hispanic/Latino ethnicity, and 43.0% household income below $50,000 per year. A weighted 25.4% of participants would consider becoming a paid home care worker. In an adjusted model, willingness to be a paid home care worker was associated with younger age [odds ratio (OR) 0.98, 95% CI 0.96-1.00, P = .032], female gender (OR 2.46, 95% CI 1.35-4.46, P = .003), Black or other race (OR 2.40, 95% CI 1.11-5.17, P = .026, and OR 3.13, 95% CI 1.30-7.54, P = .011, respectively), Hispanic ethnicity (OR 2.26, 95% CI 1.06-4.81, P = .035), household income below $50,000 per year (OR 2.00, 95% CI 1.03-3.88, P = .040), and having provided unpaid family caregiving (OR 2.08, 95% CI 1.15-3.76, P = .016). CONCLUSIONS AND IMPLICATIONS: A quarter of New Yorkers would consider working as a paid home care worker. Willingness to consider this occupation was associated with the demographic characteristics disproportionately represented in the current home care workforce. Improved working conditions and compensation could help attract and retain home care workers, thereby addressing the rising need for home care in the United States.

Utilization, Contributions, and Perceptions of Paid Home Care Workers Among Households in New York State.

BACKGROUND AND OBJECTIVES: While family caregivers have traditionally provided care for older adults with chronic conditions and disabilities, the demand for paid home care workers has increased in the last decade. Although typically thought to assist with personal care, emerging data suggest that paid home care workers assist with a wider scope of care. However, the extent and quality of the care they deliver remains poorly understood. RESEARCH DESIGN AND METHODS: Using the Empire State Poll, a telephone-based cross-sectional survey of 800 adults in New York State, we characterized the types of care that paid home care workers provided and the perceived value of that care. RESULTS: Of 800 participants surveyed, 274 reported that they or an immediate family member received care from a paid home care worker (34.3%). Of these, the majority (73.9%) reported that paid home care workers provided emotional and/or medical care, in addition to personal care. In adjusted models, providing emotional and medical care (compared to personal care alone) was associated with nearly a twofold greater perception of importance and experience by the care recipients. DISCUSSION AND IMPLICATIONS: Our findings provide additional data on how paid home care workers contribute to patient care, from the perspective of the care recipient(s). The type of care provided is associated with varying magnitudes of perceived quality. Although limited to New York, these findings have implications for paid home care workers' training and compensation. Future studies are warranted to investigate the specific factors that mediate the association between types of care provided and their perceived value.

Family Caregiver Perspectives on Benefits and Challenges of Caring for Older Adults With Paid Caregivers.

BACKGROUND: Many older adults receive help from both family caregivers and home care workers. We aimed to understand family caregivers' perspectives on home care workers. METHODS: This qualitative study took place at an academic medical center in New York, N.Y. We interviewed family caregivers of community-dwelling older adults about their experiences with home care workers. We analyzed transcripts thematically. RESULTS: We interviewed 17 family caregivers and identified four major themes: (a) home care workers provide functional and emotional support; (b) home care is logistically challenging; (c) finding the right fit between home care workers, older adults, and families is essential; and (d) home care workers and family caregivers coordinate care well beyond the initiation of home care. CONCLUSION: Despite its logistical challenges, home care benefits patients and family caregivers. Given the growing prevalence of caregiving, clinicians and family caregivers might benefit from training and support about working with home care workers.