Assessing Progress Toward the Vision of a Comprehensive, Shared Electronic Care Plan: Scoping Review.

BACKGROUND: Care plans are central to effective care delivery for people with multiple chronic conditions. But existing care plans-which typically are difficult to share across care settings and care team members-poorly serve people with multiple chronic conditions, who often receive care from numerous clinicians in multiple care settings. Comprehensive, shared electronic care (e-care) plans are dynamic electronic tools that facilitate care coordination and address the totality of health and social needs across care contexts. They have emerged as a potential way to improve care for individuals with multiple chronic conditions. OBJECTIVE: To review the landscape of e-care plans and care plan-related initiatives that could allow the creation of a comprehensive, shared e-care plan and inform a joint initiative by the National Institutes of Health and the Agency for Healthcare Research and Quality to develop e-care planning tools for people with multiple chronic conditions. METHODS: We conducted a scoping review, searching literature from 2015 to June 2020 using Scopus, Clinical Key, and PubMed; we also searched the gray literature. To identify initiatives potentially missing from this search, we interviewed expert informants. Relevant data were then identified and extracted in a structured format for data synthesis and analysis using an expanded typology of care plans adapted to our study context. The extracted data included (1) the perspective of the initiatives; (2) their scope, (3) network, and (4) context; (5) their use of open syntax standards; and (6) their use of open semantic standards. RESULTS: We identified 7 projects for e-care plans and 3 projects for health care data standards. Each project provided critical infrastructure that could be leveraged to promote the vision of a comprehensive, shared e-care plan. All the e-care plan projects supported both broad goals and specific behaviors; 1 project supported a network of professionals across clinical, community, and home-based networks; 4 projects included social determinants of health. Most projects specified an open syntax standard, but only 3 specified open semantic standards. CONCLUSIONS: A comprehensive, shared, interoperable e-care plan has the potential to greatly improve the coordination of care for individuals with multiple chronic conditions across multiple care settings. The need for such a plan is heightened in the wake of the ongoing COVID-19 pandemic. While none of the existing care plan projects meet all the criteria for an optimal e-care plan, they all provide critical infrastructure that can be leveraged as we advance toward the vision of a comprehensive, shared e-care plan. However, critical gaps must be addressed in order to achieve this vision.

Developing Information Technologies to Promote Dementia e-Friendly Communities for COVID-19 and Beyond

People living with dementia (PLWD) and their caregivers often face barriers to education, support, and services that can improve their health and quality of life. Information technology (IT) has been suggested as a solution to overcoming such barriers, though the development of evidence-based IT for dementia care is still developing. This project gathered stakeholder (e.g., providers, caregivers) perspectives on the development of a proposed IT solution to support community asset mapping that would allow families to self-assess their dementia-related service needs, educate them about available services, and link them with services they need in their community. This proposed IT would create a dementia resource database that relies on crowdsourced data from community stakeholders as well as relevant data mined from existing sources (e.g., CMS certified nursing home data). As part of the planning process, this project conducted qualitative interviews with providers and caregivers in four metro areas in Alabama and their surrounding rural communities to learn more about the content and features that stakeholders perceive as being most effective for the proposed technology. Stakeholders also discussed their experience of utilizing IT solutions during the COVID-19 pandemic to promote access and continuum of care when barriers to service intensified. Thematic findings provide detail on: 1) motivating factors among stakeholders to contribute crowdsourced data that support community members affected by dementia;2) potential barriers to implementing IT for dementia support, based on experiences with IT use during COVID-19;and 3) how stakeholders envision IT to better connect community members with needed services.