Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF—tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient’s symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.
Background Healthcare systems devote substantial resources to the development of clinical decision support (CDS) largely independently. The process of translating evidence-based practice into useful and effective CDS may be more efficient and less duplicative if healthcare systems shared knowledge about the translation, including workflow considerations, key assumptions made during the translation process, and technical details.
Objective Describe how a national repository of CDS can serve as a public resource for healthcare systems, academic researchers, and informaticists seeking to share and reuse CDS knowledge resources or “artifacts.”
Methods In 2016, the Agency for Healthcare Research and Quality (AHRQ) launched CDS Connect as a public, web-based platform for authoring and sharing CDS knowledge artifacts. Researchers evaluated early use and impact of the platform by collecting user experiences of AHRQ-sponsored and community-led dissemination efforts and through quantitative/qualitative analysis of site metrics. Efforts are ongoing to quantify efficiencies gained by healthcare systems that leverage shared, interoperable CDS artifacts rather than developing similar CDS de novo and in isolation.
Results Federal agencies, academic institutions, and others have contributed over 50 entries to CDS Connect for sharing and dissemination. Analysis indicates shareable CDS resources reduce team sizes and the number of tasks and time required to design, develop, and deploy CDS. However, the platform needs further optimization to address sociotechnical challenges. Benefits of sharing include inspiring others to undertake similar CDS projects, identifying external collaborators, and improving CDS artifacts as a result of feedback. Organizations are adapting content available through the platform for continued research, innovation, and local implementations.
Conclusion CDS Connect has provided a functional platform where CDS developers are actively sharing their work. CDS sharing may lead to improved implementation efficiency through numerous pathways, and further research is ongoing to quantify efficiencies gained.
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