Partnering with Patients and Families to Improve Diagnostic Safety through the OurDX Tool: Effects of Race, Ethnicity, and Language Preference.

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.

Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement.

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.

How Hospitals Are Addressing The Effects Of Racism: A Mixed-Methods Study Of Hospital Equity Officers.

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.

Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal.

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.

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.

Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool.

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.

Patient Identification of Diagnostic Safety Blindspots and Participation in "Good Catches" Through Shared Visit Notes.

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.

Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity.

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.

Open notes in patient care: confining deceptive placebos to the past?

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.

Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?

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.

Care partners reading patients' visit notes via patient portals: Characteristics and perceptions.

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.

Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care.

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.

Attitudes, experiences, and safety behaviours of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care.

The Cures Act made access to electronic visit notes ('open notes') nearly universal across the USA, and efforts to share open notes with patients are underway worldwide. This landmark policy change provides an opportunity to engage adolescents and young adults (AYA) early in their care, yet little is known about their attitudes related to reading notes. We compared the responses of 332 AYA (13-25 years old) and 6,914 adults (>25 years old) in a 2016 survey at two USA academic adult and paediatric hospitals. Over 85% of AYA and adults with available notes reported reading at least one note in the prior year. AYA reported similar benefits from note-reading to adults in 15 outcomes related to engagement, relational effects and safety behaviours, supporting efforts to engage AYA as partners in their care using open notes.

The benefits and harms of open notes in mental health: A Delphi survey of international experts.

IMPORTANCE: As of April 5, 2021, as part of the 21st Century Cures Act, new federal rules in the U.S. mandate that providers offer patients access to their online clinical records. OBJECTIVE: To solicit the view of an international panel of experts on the effects on mental health patients, including possible benefits and harms, of accessing their clinical notes. DESIGN: An online 3-round Delphi poll. SETTING: Online. PARTICIPANTS: International experts identified as clinicians, chief medical information officers, patient advocates, and informaticians with extensive experience and/or research knowledge about patient access to mental health notes. MAIN OUTCOMES, AND MEASURES: An expert-generated consensus on the benefits and risks of sharing mental health notes with patients. RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items: 42 potential benefits, and 48 potential harms. A total of 56 of 70 (80%) experts responded to Round 2, and 52 of 56 (93%) responded to Round 3. Consensus was reached on 65 of 88 (74%) of survey items. There was consensus that offering online access to mental health notes could enhance patients' understanding about their diagnosis, care plan, and rationale for treatments, and that access could enhance patient recall and sense of empowerment. Experts also agreed that blocking mental health notes could lead to greater harms including increased feelings of stigmatization. However, panelists predicted there could be an increase in patients demanding changes to their clinical notes, and that mental health clinicians would be less detailed/accurate in documentation. CONCLUSIONS AND RELEVANCE: This iterative process of survey responses and ratings yielded consensus that there would be multiple benefits and few harms to patients from accessing their mental health notes. Questions remain about the impact of open notes on professional autonomy, and further empirical work into this practice innovation is warranted.

Patient Perceptions of Receiving COVID-19 Test Results via an Online Patient Portal: An Open Results Survey.

BACKGROUND: In the United States, attention has been focused on "open notes" and "open results" since the Office of the National Coordinator for Health Information Technology implemented the 21st Century Cures Act Final Rule on information blocking. Open notes is an established best practice, but open results remains controversial, especially for diseases associated with stigma, morbidity, and mortality. Coronavirus disease 2019 (COVID-19) is associated with all three of these effects and represents an ideal disease for the study of open results for sensitive test results. OBJECTIVES: This study evaluates patient perspectives related to receiving COVID-19 test results via an online patient portal prior to discussion with a clinician. METHODS: We surveyed adults who underwent COVID-19 testing between March 1, 2020 and October 21, 2020 who agreed to be directly contacted about COVID-19-related research about their perspectives on receiving test results via a patient portal. We evaluated user roles (i.e., patient vs. care partner), demographic information, ease of use, impact of immediate release, notification of results, impact of viewing results on health management, and importance of sharing results with others. RESULTS: Users were mostly patients themselves. Users found the portal easy to use but expressed mixed preferences about the means of notification of result availability (e.g., email, text, or phone call). Users found immediate access to results useful for managing their health, employment, and family/childcare. Many users shared their results and encouraged others to get tested. Our cohort consisted mostly of non-Hispanic white, highly educated, English-speaking patients. CONCLUSION: Overall, patients found open results useful for COVID-19 testing and few expressed increased worries from receiving their results via the patient portal. The demographics of our cohort highlight the need for further research in patient portal equity in the age of open results.

How do older patients with chronic conditions view reading open visit notes?

BACKGROUND: We examine the experiences with and perceptions of the effect of reading clinical outpatient visit notes on patients with multiple chronic conditions at three healthcare organizations with significant experience sharing clinical notes with patients. METHODS: A cross-sectional survey was conducted via patient portals at three diverse healthcare organizations in the United States: Beth Israel Deaconess Medical Center (Boston, MA), UW Medical Center (Seattle, WA), and Geisinger Health System (Danville, PA). Participants were aged 65 and older patient portal users who read at least one clinical note over the 12 months before the survey. We examined the effect of note reading on patient engagement and managing medications. RESULTS: The majority of respondents had read two or more clinical notes in the 12 months before the survey. Patients with more than two chronic conditions were more likely than those with fewer or none to report that reading their notes helped them remember their care plan, take their medications as prescribed, and understand and feel more in control of their medications. Very few patients reported feeling worried or confused about their health or medications due to reading their notes. CONCLUSIONS: Older patients with chronic conditions are particularly vulnerable to misremembering and mismanaging their care and medication plans. Findings from this study suggest that these patients and their care partners could receive important benefits from accessing their notes. Healthcare organizations should work to maximize patient's engagement with their health information both through the patient portal and through other methods to ensure that patients and the healthcare systems reap the full benefit of the increased transparency of medical records.

Patients, clinicians and open notes: information blocking as a case of epistemic injustice.

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians ('open notes'). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients' access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts.

BACKGROUND: In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients. OBJECTIVE: The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care. METHODS: In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts' written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations. RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes. CONCLUSIONS: This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.

Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines.

ABSTRACT: In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as "open notes" is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates-with few exemptions-that providers offer patients access to their online notes (Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Available at: https://www.govinfo.gov/content/pkg/FR-2019-03-04/pdf/2019-02224.pdf#page=99). Against these policy changes, only limited attention has been paid to the ethical question about whether patients with mental health conditions should access their notes, as mentioned in the articles by Strudwick, Yeung, and Gratzer (Front Psychiatry 10:917, 2019) and Blease, O'Neill, Walker, Hägglund, and Torous (Lancet Psychiatry 7:924-925, 2020). In this article, our goal is to motivate further inquiry into opening mental health notes to patients, particularly among persons with serious mental illness and those accessing psychological treatments. Using biomedical ethical principles to frame our discussion, we identify key empirical questions that must be pursued to inform ethical practice guidelines.