Clinician and Patient Perspectives on the Exchange of Sensitive Social Determinants of Health Information.

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.

Embedding Authorship Identity into a Portal-Based Agenda Setting Intervention to Support Older Adults and Care Partners.

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.

Shared Access to Adults' Patient Portals: A Secret Shopper Exercise.

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.

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

The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners.

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

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners ( = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement.

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.

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.

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.

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.

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.

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.

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.

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

Unlabelled: 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.

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.

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.

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.

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.

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.

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.

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.

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.

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').

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.

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

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.

Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness.

This survey study examines how patients with a mental illness diagnosis who read at least 1 clinical note in the last year perceived its association with their medication adherence.