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.

"Caregiving is teamwork " Information sharing in home care for older adults with disabilities living in the community.

AIM: We examined information sharing between direct care workers, family caregivers, and clinicians involved in the care of older adults with disabilities. METHODS: Semi-structured interviews with N = 11 representatives of home care agencies ("residential service agencies" in Maryland). RESULTS: Work system and process characteristics relevant to information sharing included: (1) using electronic management systems and patient portals to communicate within agencies and with clinicians, (2) implementing tools to gather information about client goals, preferences, and routines, and (3) relying on family members for information about clients' needs. Participants did not report differences in dementia-related care coordination; however, dementia-related adaptations involved additional considerations for navigating relationships with family and standardizing processes to communicate with clinicians. CONCLUSION: Findings highlight care demands experienced by direct care workers and support calls to better coordinate information sharing between interdisciplinary care teams.

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.

Use of the patient portal among older adults with diagnosed dementia and their care partners.

INTRODUCTION: Care partners are at the forefront of dementia care, yet little is known about patient portal use in the context of dementia diagnosis. METHODS: We conducted an observational cohort study of date/time-stamped patient portal use for a 5-year period (October 3, 2017-October 2, 2022) at an academic health system. The cohort consisted of 3170 patients ages 65+ with diagnosed dementia with 2+ visits within 24 months. Message authorship was determined by manual review of 970 threads involving 3065 messages for 279 patients. RESULTS: Most (71.20%) older adults with diagnosed dementia were registered portal users but far fewer (10.41%) had a registered care partner with shared access. Care partners authored most (612/970, 63.09%) message threads, overwhelmingly using patient identity credentials (271/279, 97.13%). DISCUSSION: The patient portal is used by persons with dementia and their care partners. Organizational efforts that facilitate shared access may benefit the support of persons with dementia and their care partners. Highlights Patient portal registration and use has been increasing among persons with diagnosed dementia. Two thirds of secure messages from portal accounts of patients with diagnosed dementia were identified as being authored by care partners, primarily using patient login credentials. Care partners who accessed the patient portal using their own identity credentials through shared access demonstrate similar levels of activity to patients without dementia. Organizational initiatives should recognize and support the needs of persons with dementia and their care partners by encouraging awareness, registration, and use of proper identity credentials, including shared, or proxy, portal access.

Patient Portal Use Among Older Adults With Dementia Diagnosis.

This cohort study assesses the level of engagement with an electronic health management system among patients with recently diagnosed dementia and their caregivers.

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.

"Medication Is Just One Piece of the Whole Puzzle": How Nursing Homes Change Their Use of Antipsychotic Medications.

Antipsychotic medication use for nursing home residents with dementia poses major patient safety challenges. This article investigates health professionals' experiences with decision-making during changes under the National Partnership to Improve Dementia Care in Nursing Homes (National Partnership) and its companion state coalitions. These programs were introduced in 2012 to encourage reductions in antipsychotic use and increased use of nonpharmacological treatments for dementia. Interviews with 40 nursing home physicians and staff in seven states found that reducing antipsychotics is more time and resource-intensive than relying on medication, because it requires a person-centered approach. However, respondents supported reductions in antipsychotic use, and indicated that with sufficient staffing, effective communications, and training, they could create or implement individualized treatments. Their positive attitudes suggest that the National Partnership has been a catalyst in reducing antipsychotic medications, and their perspectives can inform further research, policy and practice in nursing homes toward achieving quality dementia care.

Making Decisions About Stopping Medicines for Well-Controlled Juvenile Idiopathic Arthritis: A Mixed-Methods Study of Patients and Caregivers.

OBJECTIVE: Improved treatments for juvenile idiopathic arthritis (JIA) have increased remission rates. We conducted this study to investigate how patients and caregivers make decisions about stopping medications when JIA is inactive. METHODS: We performed a mixed-methods study of caregivers and patients affected by JIA, recruited through social media and flyers, and selected by purposive sampling. Participants discussed their experiences with JIA, medications, and decision-making through recorded telephone interviews. Of 44 interviewees, 20 were patients (50% ages <18 years), and 24 were caregivers (50% caring for children ages ≤10 years). We evaluated characteristics associated with high levels of reported concerns about JIA or medicines using Fisher's exact testing. RESULTS: Decisions about stopping medicines were informed by competing risks between disease activity and treatment. Participants who expressed more concerns about JIA were more likely to report disease-related complications (P = 0.002) and more motivated to continue treatment. However, participants expressing more concern about medicines were more likely to report treatment-related complications (P = 0.04) and felt more compelled to stop treatment. Additionally, participants considered how JIA or treatments facilitated or interfered with their sense of normalcy and safety, expressed feelings of guilt and regret about previous or potential adverse events, and reflected on uncertainty and unpredictability of future harms. Decision-making was also informed by trust in rheumatologists and other information sources (e.g., family and online support groups). CONCLUSION: When deciding whether to stop medicines whenever JIA is inactive, patients and caregivers weigh competing risks between disease activity and treatment. Based on our results, we suggest specific approaches for clinicians to perform shared decision-making regarding stopping medicines for JIA.