Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care.

The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient's identity credentials-a "do-it-yourself" solution in conflict with a health systems' legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved-patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.

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.

Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners' preparedness for the visit and opening a direct channel to express concerns about patients' cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes' and potential for future implementation and dissemination.

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.

Patient portal interventions: a scoping review of functionality, automation used, and therapeutic elements of patient portal interventions.

Objectives: We sought to understand the objectives, targeted populations, therapeutic elements, and delivery characteristics of patient portal interventions. Materials and Methods: Following Arksey and O-Malley's methodological framework, we conducted a scoping review of manuscripts published through June 2022 by hand and systematically searching PubMed, PSYCHInfo, Embase, and Web of Science. The search yielded 5403 manuscripts; 248 were selected for full-text review; 81 met the eligibility criteria for examining outcomes of a patient portal intervention. Results: The 81 articles described: trials involving comparison groups (n = 37; 45.7%), quality improvement initiatives (n = 15; 18.5%), pilot studies (n = 7; 8.6%), and single-arm studies (n = 22; 27.2%). Studies were conducted in primary care (n = 33, 40.7%), specialty outpatient (n = 24, 29.6%), or inpatient settings (n = 4, 4.9%)-or they were deployed system wide (n = 9, 11.1%). Interventions targeted specific health conditions (n = 35, 43.2%), promoted preventive services (n = 19, 23.5%), or addressed communication (n = 19, 23.4%); few specifically sought to improve the patient experience (n = 3, 3.7%). About half of the studies (n = 40, 49.4%) relied on human involvement, and about half involved personalized (vs exclusively standardized) elements (n = 42, 51.8%). Interventions commonly collected patient-reported information (n = 36, 44.4%), provided education (n = 35, 43.2%), or deployed preventive service reminders (n = 14, 17.3%). Discussion: This scoping review finds that most patient portal interventions have delivered education or facilitated collection of patient-reported information. Few interventions have involved pragmatic designs or been deployed system wide. Conclusion: The patient portal is an important tool in real-world efforts to more effectively support patients, but interventions to date rely largely on evidence from consented participants rather than pragmatically implemented systems-level initiatives.

Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations: A Scoping Review.

Importance: Family 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. Objective: To 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 Review: Following 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. Findings: Few 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 Relevance: In 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.