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.

ImportanceFamily and other unpaid care partners may bridge accessibility challenges in interacting with the patient portal, but the extent and nature of this involvement is not well understood.ObjectiveTo inform an emerging research agenda directed at more purposeful inclusion of care partners within the context of digital health equity by (1) quantifying care partners’ uptake and use of the patient portal in adolescent and adult patients, (2) identifying factors involving care partners’ portal use across domains of the System Engineering Initiative for Patient Safety model, and (3) assessing evidence of perceived or actual outcomes of care partners’ portal use.Evidence ReviewFollowing Arksey and O’Malley’s methodologic framework, a scoping review of manuscripts published February 1 and March 22, 2022, was conducted by hand and a systematic search of PubMed, PsycInfo, Embase, and Web of Science. The search yielded 278 articles; 125 were selected for full-text review and 41 were included.FindingsFew adult patient portal accounts had 1 or more formally registered care partners (<3% in 7 of 7 articles), but care partners commonly used the portal (8 of 13 contributing articles reported >30% use). Care partners less often authored portal messages with their own identity credentials (<3% of portal messages in 3 of 3 articles) than with patient credentials (20%-60% of portal messages in 3 of 5 articles). Facilitators of care partner portal use included markers of patient vulnerability (13 articles), care partner characteristics (15 articles; being female, family, and competent in health system navigation), and task-based factors pertaining to ease of information access and care coordination. Environmental (26 articles) and process factors (19 articles, eg, organizational portal registration procedures, protection of privacy, and functionality) were identified as influential to care partner portal use, but findings were nuanced and precluded reporting on effects. Care partner portal use was identified as contributing to both patient and care partner insight into patient health (9 articles), activation (7 articles), continuity of care (8 articles), and convenience (6 articles).Conclusions and RelevanceIn this scoping review, care partners were found to be infrequently registered for the patient portal and more often engaged in portal use with patient identity credentials. Formally registering care partners for the portal was identified as conferring potential benefits for patients, care partners, and care quality.

Purpose The cancer survivor population is projected to increase to 22.2 million by 2030, requiring improved collaboration between oncology and primary care practices (PCP). PCPs may feel ill-equipped to provide cancer survivorship care to patients without input from cancer specialists. Compared with nonrural cancer survivors, rural cancer survivors report experiencing worse treatment-related symptoms. The goal of this study was to gain a better understanding of the perspectives of PCP teams towards survivorship care and to develop and test an interdisciplinary training program to improve cancer survivorship care in rural practice. Methods This study was conducted in two phases. First, focus groups were conducted with rural PCP teams to gather information regarding beliefs, practices, and barriers related to cancer survivorship care delivery. A thematic analysis was completed using an iterative process of reviewing transcripts. Results from phase 1 were used to inform the development of a pilot intervention tested within seven rural PCPs (phase 2). Pre- and post-intervention knowledge changes were compared, and post-session interviews assessed planned or sustained practice changes. Results Seven PCPs participated in focus groups (phase 1). Cross-cutting themes identified included (1) organizational barriers affecting the delivery of cancer survivorship care, (2) challenges of role delineation with specialists and patients, (3) difficulty accessing survivorship care and resources, and (4) providers’ lack of knowledge of cancer survivorship care. For phase 2, seven practices participated in four case-based educational sessions. Within and between practice changes were identified. Conclusion This project explored cancer survivorship perspectives among PCP teams. Lack of familiarity with evidence-based guidelines and the inability to identify cancer survivors was apparent during discussions and led to the implementation of the phase 2 intervention, iSurvive. As a result, PCPs either changed or planned changes to improve the identification and evidence-based care of cancer survivors. Implications for Cancer Survivors Address barriers to access cancer survivorship care in rural primary care practices.

85 Background: While evidence-based guidelines for survivorship care exist, implementation in oncology and primary care practices has fallen short. There is little evidence of the barriers preventing successful implementation in rural primary care and oncology practices. We sought to assess knowledge gaps and barriers to successful implementation of evidence-based survivorship care guidelines in rural Kansas practices. Methods: Midwest Cancer Alliance, outreach arm of the University of Kansas Cancer Center, and Kansas Patients and Providers Engaged in Prevention Research, completed interviews in rural primary care and oncology practices. Results: Primary Care (n=7) and Oncology Practices (n=4): Interviews with primary care physicians, medical oncologists, advanced practice providers, nurses, tumor registrar, outreach coordinator, and office management & staff. Conclusions: Rural primary care and oncology practices experienced barriers to delivering survivorship care including: educational gaps, communication of history, treatment, and recommendations, EHR integration, and lack of resources. Next steps focus on a unified approach to state-wide survivorship education of patients, primary care and oncology practices. [Table: see text]

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