Millions of Americans are care partners but they are rarely identified or supported in care delivery. With a portal-based questionnaire, we identified participants with caregiving responsibilities and further evaluated them in order to offer support.
Wolff, Jennifer
Issue Brief: Shared Access to the Patient Portal
This issue brief summarizes the activities and learnings of the Coalition for Care Partners around shared access. Research has spanned from 2019 to 2025, including the formation of the Shared Access Learning Collaborative. The Coalition offers recommendations for policymakers, clinical leadership, patients, and care partners.
Hospitalized patient portal access in the post-information blocking rule era
This single-center, cross-sectional observational study highlights low patient portal utilization among hospitalized patients and disparities in access based on race/ethnicity, gender, age, and insurance status.
Users’ perspectives on a demonstration to increase shared access to older adults’ patient portals
As shared access uptake remains low, the Coalition for Care Partners, and three healthcare delivery organizations, co-designed an initiative promoting shared access to the patient portals of older adults.
Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal–Based Intervention
This study aimed to implement a novel patient portal–based intervention to identify, engage, and support care partners in clinical settings. Early results suggest that the intervention could be an easily scalable and adaptable method of identifying and supporting care partners in clinical settings.
A Multisite Demonstration of Shared Access to Older Adults’ Patient Portals
In this quality improvement study of 16,005 patients from 3 diverse US sites, new shared access registration was unchanged; however, use of shared access functionality among registered care partners increased. Care partners logged in more frequently, viewed more laboratory results and clinical notes, and scheduled more visits after the demonstration.
Shared access to adults’ patient portals: A secret shopper exercise
Our secret shopper exercise unveiled noteworthy variability in the experiences of 18 individuals attempting to grant or receive shared access to the patient portal, highlighting multiple barriers and facilitators to shared access. The findings underscore the imperative for cross- and intra-organizational collaboration aimed at learning from the diverse experiences of patients, care partners, clinicians, and staff, and disseminating best practices.
Patient portals fail to collect structured information about who else is involved in a person’s care
“Shared access” uses separate identity credentials to differentiate between patients and care partner portal users. EHR vendors must recognize that both patients and care partners are important users of their products and acknowledge and support the critical contributions of care partners as distinct from patients.
Co-designing an initiative to increase shared access to older adults’ patient portals: Stakeholder engagement
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. Educational materials are publicly available at Coalition for Care Partners.
Catalyzing dementia care through the learning health system and consumer health information technology
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.
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