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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.

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., Competing Interests: Declarations:. Conflict of Interest:: CT Lin reports serving as an unpaid advisory board member to Doximity Telehealth and Epic Physician Advisory Council. Hillary Lum reports serving as Editor-in-Chief of Palliative Medicine Reports. The remaining authors have nothing to disclose., (© 2024. The Author(s), under exclusive licence to Society of General Internal Medicine.)

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:  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.)

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.)

Background: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited., Objective: We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals., Methods: In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs., Results: Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits., Conclusions: Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners., (©Vadim Dukhanin, Jennifer L Wolff, Liz Salmi, Kendall Harcourt, Deborah Wachenheim, Ira Byock, Matthew J Gonzales, Doug Niehus, Marianne Parshley, Caroline Reay, Sara Epstein, Supriya Mohile, Timothy W Farrell, Mark A Supiano, Anushka Jajodia, Catherine M DesRoches, The Shared Access Project Team. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 22.11.2023.)

Hospital equity officers have become critical leaders in the effort to address the determinants of health care disparities, including structural racism. In this mixed-methods study, we surveyed a national sample of equity officers and interviewed a subset of respondents to provide additional perspective. About one-half of survey respondents reported at least some obstacles to achieving their health equity objectives, including racist beliefs among people working in their hospitals and health care systems, policies that perpetuate racism, and a lack of staff diversity. To address these challenges, some hospitals are collecting information about instances of racism, reviewing clinical algorithms for evidence of bias, or forming community partnerships. However, in interviews, equity officers pointed out that racism is a public health issue that cannot be adequately addressed solely within the health care system. Given the relative newness of most hospital equity officer positions, our research may be viewed as an early glimpse into the challenges and opportunities of this evolving work.

Background: Patients and families at risk for health disparities may also be at higher risk for diagnostic errors but less likely to report them., Objectives: This study aimed to explore differences in race, ethnicity, and language preference associated with patient and family contributions and concerns using an electronic previsit tool designed to engage patients and families in the diagnostic process (DxP)., Methods: Cross-sectional study of 5,731 patients and families presenting to three subspecialty clinics at an urban pediatric hospital May to December 2021 who completed a previsit tool, codeveloped and tested with patients and families. Prior to each visit, patients/families were invited to share visit priorities, recent histories, and potential diagnostic concerns. We used logistic regression to determine factors associated with patient-reported diagnostic concerns. We conducted chart review on a random subset of visits to review concerns and determine whether patient/family contributions were included in the visit note., Results: Participants provided a similar mean number of contributions regardless of patient race, ethnicity, or language preference. Compared with patients self-identifying as White, those self-identifying as Black (odds ratio [OR]: 1.70; 95% confidence interval [CI]: [1.18, 2.43]) or "other" race (OR: 1.48; 95% CI: [1.08, 2.03]) were more likely to report a diagnostic concern. Participants who preferred a language other than English were more likely to report a diagnostic concern than English-preferring patients (OR: 2.53; 95% CI: [1.78, 3.59]. There were no significant differences in physician-verified diagnostic concerns or in integration of patient contributions into the note based on race, ethnicity, or language preference., Conclusion: Participants self-identifying as Black or "other" race, or those who prefer a language other than English were 1.5 to 2.5 times more likely than their counterparts to report potential diagnostic concerns when proactively asked to provide this information prior to a visit. Actively engaging patients and families in the DxP may uncover opportunities to reduce the risk of diagnostic errors and potential safety disparities., Competing Interests: None declared., (The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/).)

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., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Objective: Patients and families are key partners in diagnosis, but methods to routinely engage them in diagnostic safety are lacking. Policy mandating patient access to electronic health information presents new opportunities. We tested a new online tool ("OurDX") that was codesigned with patients and families, to determine the types and frequencies of potential safety issues identified by patients/families with chronic health conditions and whether their contributions were integrated into the visit note., Methods: Patients/families at 2 US healthcare sites were invited to contribute, through an online previsit survey: (1) visit priorities, (2) recent medical history/symptoms, and (3) potential diagnostic concerns. Two physicians reviewed patient-reported diagnostic concerns to verify and categorize diagnostic safety opportunities (DSOs). We conducted a chart review to determine whether patient contributions were integrated into the note. We used descriptive statistics to report implementation outcomes, verification of DSOs, and chart review findings., Results: Participants completed OurDX reports in 7075 of 18 129 (39%) eligible pediatric subspecialty visits (site 1), and 460 of 706 (65%) eligible adult primary care visits (site 2). Among patients reporting diagnostic concerns, 63% were verified as probable DSOs. In total, probable DSOs were identified by 7.5% of pediatric and adult patients/families with underlying health conditions, respectively. The most common types of DSOs were patients/families not feeling heard; problems/delays with tests or referrals; and problems/delays with explanation or next steps. In chart review, most clinician notes included all or some patient/family priorities and patient-reported histories., Conclusions: OurDX can help engage patients and families living with chronic health conditions in diagnosis. Participating patients/families identified DSOs and most of their OurDX contributions were included in the visit note., (© The Author(s) 2023. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Importance: The 21st Century Cures Act Final Rule mandates the immediate electronic availability of test results to patients, likely empowering them to better manage their health. Concerns remain about unintended effects of releasing abnormal test results to patients., Objective: To assess patient and caregiver attitudes and preferences related to receiving immediately released test results through an online patient portal., Design, Setting, and Participants: This large, multisite survey study was conducted at 4 geographically distributed academic medical centers in the US using an instrument adapted from validated surveys. The survey was delivered in May 2022 to adult patients and care partners who had accessed test results via an online patient portal account between April 5, 2021, and April 4, 2022., Exposures: Access to test results via a patient portal between April 5, 2021, and April 4, 2022., Main Outcomes and Measures: Responses to questions related to demographics, test type and result, reaction to result, notification experience and future preferences, and effect on health and well-being were aggregated. To evaluate characteristics associated with patient worry, logistic regression and pooled random-effects models were used to assess level of worry as a function of whether test results were perceived by patients as normal or not normal and whether patients were precounseled., Results: Of 43 380 surveys delivered, there were 8139 respondents (18.8%). Most respondents were female (5129 [63.0%]) and spoke English as their primary language (7690 [94.5%]). The median age was 64 years (IQR, 50-72 years). Most respondents (7520 of 7859 [95.7%]), including 2337 of 2453 individuals (95.3%) who received nonnormal results, preferred to immediately receive test results through the portal. Few respondents (411 of 5473 [7.5%]) reported that reviewing results before they were contacted by a health care practitioner increased worry, though increased worry was more common among respondents who received abnormal results (403 of 2442 [16.5%]) than those whose results were normal (294 of 5918 [5.0%]). The result of the pooled model for worry as a function of test result normality was statistically significant (odds ratio [OR], 2.71; 99% CI, 1.96-3.74), suggesting an association between worry and nonnormal results. The result of the pooled model evaluating the association between worry and precounseling was not significant (OR, 0.70; 99% CI, 0.31-1.59)., Conclusions and Relevance: In this multisite survey study of patient attitudes and preferences toward receiving immediately released test results via a patient portal, most respondents preferred to receive test results via the patient portal despite viewing results prior to discussion with a health care professional. This preference persisted among patients with nonnormal results.

Policy Points Patients and families can identify clinically relevant errors, including "blindspots"-safety hazards that are difficult for clinicians or organizations to see. Health information transparency, including patient access to electronic visit notes, now federally mandated in the US and the subject of policy debate worldwide, creates a new opportunity to engage patients in diagnostic safety. However, not all patients access notes. Patient identification of blindspots in their notes underscores the need to systematically and equitably engage willing patients in safety, promote patient "good catches," and establish routine systems for patient feedback to help avoid preventable diagnostic errors and delays., Context: Policy shifts toward health information transparency provide a new opportunity for patients to contribute to diagnostic safety. We investigated whether sharing clinical notes with patients can support identification of "diagnostic safety blindspots"-potentially consequential breakdowns in the diagnostic process that may be difficult for clinical staff to observe., Method: We used mixed methods to analyze patient-reported ambulatory documentation errors among 22,889 patients at three US health care centers who read ≥ 1 visit note(s). We identified blindspots by tailoring a previously established taxonomy. We used multiple regression analysis to identify factors associated with blindspot identification., Findings: 774 patients reported a total of 962 blindspots in 4 categories: (1) diagnostic misalignments (n = 421, 43.8%), including inaccurate symptoms or histories and failures or delay in diagnosis; (2) errors of omission (38.1%) including missed main concerns or next steps, and failure to listen to patients; (3) problems occurring outside visits (14.3%) such as tests, referrals, or appointment access; and (4) multiple low-level problems (3.7%) cascading into diagnostic breakdowns. Many patients acted on the blindspots they identified, resulting in "good catches" that may prevent potential negative consequences. Older, female, sicker, unemployed or disabled patients, or those who work in health care were more likely to identify a blindspot. Individuals reporting less formal education; those self-identifying as Black, Asian, other, or multiple races; and participants who deferred decision-making to providers were less likely to report a blindspot., Conclusion: Patients who read notes have unique insight about potential errors in their medical records that could impact diagnostic reasoning but may not be known to clinicians-underscoring a critical role for patients in diagnostic safety and organizational learning. From a policy standpoint, organizations should encourage patient review of visit notes, build systems to track patient-reported blindspots, and promote equity in note access and blindspot reporting., (© 2022 Milbank Memorial Fund.)

Increasing numbers of health organisations are offering some or all of their patients access to the visit notes housed in their electronic health records (so-called 'open notes'). In some countries, including Sweden and the USA, this innovation is advanced with patients using online portals to access their clinical records including the visit summaries written by clinicians. In many countries, patients can legally request copies of their records; however, open notes are different because this innovation offers patients rapid, real-time access via electronic devices. In this brief report, we explore what open notes might mean for placebo use in clinical care. Survey research into patient access to their clinical notes shows that increased transparency enhances patients' understanding about their medications and augments engagement with their care. We reflect on the consequences of access for placebo prescribing, particularly for the common practice of deceptive placebo use, in which patients are not aware they are being offered a placebo. In addition, we explore how open notes might facilitate placebo and nocebo effects among patients. Bridging placebo studies with medical ethics, we identify a range of empirical research gaps that now warrant further study., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician's view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient-reported diagnostic process-related breakdowns (PRDBs) to inform organisational learning., Method: A multi-stakeholder advisory group including patients, families, clinicians, and experts in diagnostic error, patient engagement and safety, and user-centred design, co-developed a framework for PRDBs in ambulatory care. We tested the framework using standard qualitative analysis methods with two physicians and one patient coder, analysing 2165 patient-reported ambulatory errors in two large surveys representing 25 425 US respondents. We tested intercoder reliability of breakdown categorisation using the Gwet's AC1 and Cohen's kappa statistic. We considered agreement coefficients 0.61-0.8=good agreement and 0.81-1.00=excellent agreement., Results: The framework describes 7 patient-reported breakdown categories (with 40 subcategories), 19 patient-identified contributing factors and 11 potential patient-reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance. The frequency of PRDBs was 6.4% in one dataset and 6.9% in the other. Intercoder reliability showed good-to-excellent reliability in each dataset: AC1 0.89 (95% CI 0.89 to 0.90) to 0.96 (95% CI 0.95 to 0.97); kappa 0.64 (95% CI 0.62, to 0.66) to 0.85 (95% CI 0.83 to 0.88)., Conclusions: The PRDB framework, developed in partnership with patients/families, can help organisations identify and reliably categorise PRDBs, including some that are invisible to clinicians; guide interventions to engage patients and families as diagnostic partners; and inform whole organisational learning., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery., (©Jennifer L Wolff, Vadim Dukhanin, Julia G Burgdorf, Catherine M DesRoches. Originally published in JMIR Aging (https://aging.jmir.org), 04.05.2022.)

Background: Care partners are key members of patients' health care teams, yet little is known about their experiences accessing patient information via electronic portals., Objective: To better understand the characteristics and perceptions of care partners who read patients' electronic visit notes., Patient Involvement: Focus groups with diverse patients from a community health center provided input into survey development., Methods: We contacted patient portal users at 3 geographically distinct sites in the US via email in 2017 for an online survey including open ended questions which we qualitatively analyzed., Results: Respondents chose whether to answer as care partners (N = 874) or patients (N = 28,782). Among care partner respondents, 44% were spouses, 43% children/other family members, and 14% friends/neighbors/other. Both care partners and patients reported that access to electronic notes was very important for promoting positive health behaviors, but care partners' perceptions of importance were consistently more positive than patients' perceptions of engagement behaviors. Open-ended comments included positive benefits such as: help with remembering the plan for care, coordinating care with other doctors, decreasing stress of care giving, improving efficiency of visits, and supporting patients from a geographical distance. They also offered suggestions for improving electronic portal and note experience for care partners such as having a separate log on for care partners; having doctors avoid judgmental language in their notes; and the ability to prompt needed medical care for patients., Discussion: Care partners value electronic access to patients' health information even more than patients. The majority of care partners were family members, whose feedback is important for improving portal design that effectively engages these care team members., Practical Value: Patient care in the time of COVID-19 increasingly requires social distancing which may place additional burden on care partners supporting vulnerable patients. Access to patient notes may promote quality of care by keeping care partners informed, and care partner's input should be used to optimize portal design and electronic access to patient information., Competing Interests: Declaration of Competing Interest The authors report no competing financial or personal relationships with other people or organizations that could inappropriately influence this work., (Copyright © 2021 The Authors. Published by Elsevier B.V. All rights reserved.)

This paper connects findings from the field of placebo studies with research into patients' interactions with their clinician's visit notes, housed in their electronic health records. We propose specific hypotheses about how features of clinicians' written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. We conclude with actionable proposals for testing our understanding of the health effects of access to visit notes.