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Importance: Social determinant of health (SDOH) data are essential to individualized care and reducing health disparities. However, there is little standardization in the way that SDOH data are collected, and barriers to increasing the collection of such data exist at both the patient and clinician levels., Objective: To evaluate clinician, patient, and care partner perspectives on the barriers to and facilitators of patients sharing SDOH information with their clinicians., Design, Setting, and Participants: This qualitative study included clinicians, patients, and care partners across the United States. Focus groups were conducted between September 2022 and February 2023 to understand the experience of collecting, documenting, and exchanging SDOH data., Main Outcomes and Measures: Rapid assessment procedures were used to analyze focus group transcripts, creating summaries, codes, and themes mapped directly to the project research questions., Results: A total of 235 individuals participated, including 109 (46.4%) clinicians (60 [55.0%] male; 25 [22.9%] Asian, 2 [1.8%] Black, and 74 [67.9%] White) and 126 (53.6%) patients and care partners (45 [35.7%] male; 1 [0.8%] Asian, 48 [38.1%] Black, and 64 [50.8%] White). Clinicians and patients agreed that SDOH data are important for clinicians to know. Both clinicians and patients wanted a structured, standardized way to collect SDOH data in the future, accompanied by time for more in-depth discussion during the visit. However, they highlighted numerous issues that impact collecting these data, including beliefs about how the information will be used, the clinician-patient relationship, having enough of the right staff, time needed to collect SDOH information, and technology used to collect the data (eg, usability, standardization)., Conclusions and Relevance: This qualitative study of the experience of collecting, documenting, and exchanging SDOH data underscores the ongoing barriers to widespread adoption of uniform approaches to SDOH data documentation as well as factors that may help lower those barriers, such as trusting patient-clinician relationships, greater transparency in how the data will be used, and targeted resources. A multifaceted approach to addressing the concerns raised by clinicians, patients, and care partners is required to ensure that such data can be captured in a way that improves care and allows for progress toward an equitable health care system.

Background: Patients, families, and clinicians increasingly communicate through patient portals. Due to potential for multiple authors, clinicians need to know who is communicating with them. OurNotes is a portal-based pre-visit agenda setting questionnaire. This study adapted OurNotes to include a self-identification question to help clinicians interpret information authored by nonpatients., Objectives: To describe adapted OurNotes use and clinician feedback to inform broader implementation., Design: Evaluation of adapted OurNotes in a geriatric practice., Participants: Older adults with a portal account and a clinic visit; eight clinicians were interviewed., Intervention: OurNotes adaptation to clarify whether the author is the patient, the patient with help, or a nonpatient., Approach: Cross-sectional chart review of OurNotes completion, patient characteristics, and visit topics by author type. Clinician interviews explored experiences with OurNotes., Results: Out of 503 visits, 134 (26%) OurNotes questionnaires were completed. Most respondents (n = 92; 69%) identified as the patient, 18 (14%) identified as the patient with help, and 24 (17%) identified as someone other than the patient. On average, patients who authored their own OurNotes were younger (80.9 years) compared to patients who received assistance (85.8 years), or patients for whom someone else authored OurNotes (87.8 years) (p < 0.001). A diagnosis of cognitive impairment was present among 20% of patients who self-authored OurNotes vs. 79% of patients where someone else authored OurNotes (p < 0.001). Topics differed when OurNotes was authored by patients vs. nonpatients. Symptoms (52% patient vs. 83% nonpatient, p = 0.004), community resources (6% vs. 42%, p < 0.001), dementia (5% vs. 21%, p = 0.009), and care partner concerns (1% vs. 12%, p = 0.002) were more often mentioned by nonpatients. Clinicians valued the self-identification question for increasing transparency about who provided information., Conclusions: A self-identification question can identify nonpatient authors of OurNotes. Future steps include evaluating whether transparency improves care quality, especially when care partners are involved., (© 2024. The Author(s), under exclusive licence to Society of General Internal Medicine.)

Background:  Millions of Americans manage their health care with the help of a trusted individual. Shared access to a patient's online patient portal is one tool that can assist their care partner(s) in gaining access to the patient's health information and allow for easy exchange with the patient's care team. Shared access provides care partners with a validated and secure method for accessing the patient's portal account using their own login credentials. Shared access provides extra privacy protection and control to the patient, who designates which individuals can view their record. It also reduces confusion for the care team when interacting with the care partner via the portal. Shared access is underutilized among adult patients' care partners., Objectives:  Investigate the process of granting or receiving shared access at multiple health care organizations in the United States to learn about barriers and facilitators experienced by patients and care partners., Methods:  The Shared Access Learning Collaborative undertook a "Secret Shopper" exercise. Participants attempted to give or gain shared access to another adult's portal account. After each attempt they completed a 14-question survey with a mix of open- and closed-ended questions., Results:  Eighteen participants attempted to grant or receive shared access a total of 24 times. Fifteen attempts were successful. Barriers to success included requiring paper forms with signatures, lack of knowledgeable staff, lack of access to technical support, and difficult-to-navigate technology. Facilitators included easy-to-navigate online processes and accessible technical help. Participants who were successful in gaining shared access reported feeling more informed and able to engage in shared decision-making., Conclusion:  The outcomes of our secret shopper exercise underscore the importance of collaboration aimed at learning from diverse encounters and disseminating the best practices. This is essential to address technical, informational, and organizational obstacles that may impede the widespread and accessible adoption of shared access., Competing Interests: None declared., (Thieme. All rights reserved.)

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., (©Liz Salmi, Danielle Peereboom, David A Dorr, Leilani R Graham, Jennifer L Wolff, Catherine M DesRoches. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.06.2024.)

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., Competing Interests: CT Lin reports serving as an unpaid advisory board member to Doximity Telehealth and Epic Physician Advisory Council. The remaining authors have nothing to disclose., (© 2024 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.)