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 aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care.
Proxy Access/Caregivers
Shared access to patient portals for older adults: Implications for privacy and digital health equity
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.
The Value of OpenNotes for Pediatric Patients, Their Families and Impact on the Patient–Physician Relationship
Although limited by relatively low survey response rate, OpenNotes was well-received by parents of pediatric patients without untoward consequences. The main concerns pediatricians raise about OpenNotes proved to not be issues in the pediatric population. Our results demonstrate clear benefits to adoption of OpenNotes. This provides reassurance that the transition to sharing notes with pediatric patients can be successful and value additive.
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
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.
Co-development of OurDX—an online tool to facilitate patient and family engagement in the diagnostic process
Patients and their care partners are usually the first to notice new or changing symptoms and are the connecting “thread” between different healthcare encounters. In this article Sigall Bell, Fabienne Bourgeois, Stephen Liu, and Eric Thomas—along with patient partners Betsy Lowe and Liz Salmi—describe the co-development of an online tool called “OurDX” (Our Diagnosis) to engage patients and families in the diagnostic process
Care Partners and Patient Portals—Faulty Access, Threats to Privacy, and Ample Opportunity
Care partners value having access to their loved one’s information. The patient portal is a convenient way to access test results and clinical notes, communicate with health care practitioners, and link care partners to the clinical team, making it a powerful tool for realizing the goals of care.
Empowering informal caregivers with health information: OpenNotes as a safety strategy
Patients frequently depend on informal caregivers (e.g., family, friends, or paid workers) to assist with various aspects of medical care, such as medication administration and travel to medical appointments. OpenNotes seeks to share clinicians’ notes with patients through patient portals. Although patients frequently grant portal access to caregivers, the impact of this improved access to health information on the safety of care provided by caregivers remains unknown. Researchers sent a survey to 24,722 patients participating in OpenNotes who had at least one available visit note during the study period. The surveys were sent through the patient portal. Out of the 7058 surveys returned, 150 respondents self-identified as caregivers. Analysis of survey data revealed that access to patient notes enhanced caregiver understanding of recommended medical care including tests and referrals, reminded them about necessary testing, helped them understand results, reminded them about appointments, and improved caregiver ability to assist patients with medications. An Annual Perspective discussed the potential of health information technology to improve patient and caregiver engagement in safety.
What patients value about reading visit notes: a qualitative inquiry of patient experiences with their health information
Background: Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking.
Objective: We aimed to learn more about patient experiences with reading and providing feedback on their visit notes.
Methods: We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74).
Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records
Care partners were more likely to access and use patient portal functionality and reported improved communication with patients’ providers at follow-up. Our findings suggest that offering patients and care partners access to doctors’ notes is acceptable and improves communication and patients’ confidence in managing their care.
A patient feedback reporting tool for OpenNotes: Implications for patient-clinician safety and quality partnerships
Patients and care partners reported potential safety concerns in about one-quarter of reports, often resulting in a change to the record or care. Early data from an OpenNotes patient reporting tool may help engage patients as safety partners without apparent negative consequences for clinician workflow or patient-clinician relationships.
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