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.
In a rural academic internal medicine clinic, female patients, aged 41–65, non-smokers, and those without certain chronic conditions were more likely to use an online patient portal. Recognizing and addressing barriers to patient portal use is essential for robust and sustained patient portal uptake and ensuring that the benefits of portal use are equally distributed among all patients.
The 21st Century Cures Act has accelerated adoption of OpenNotes, providing new opportunities for patient and family engagement in their care. However, these regulations present new challenges, particularly for pediatric health systems aiming to improve information sharing while minimizing risks associated with adolescent confidentiality and safety.
We found that Black patients at an urban academic medical center had disproportionately higher odds of negative patient descriptors appearing in the history and physical notes of their EHRs compared with White patients. This difference may indicate implicit racial bias not only among individual providers but also among the broader beliefs and attitudes maintained by the health care system. Such bias has the potential to stigmatize Black patients and possibly compromise their care, raising concerns about systemic racism in health care.
Since April, the US has required healthcare providers to allow patients full access to their medical records—a milestone in a decades-long effort by a group of researchers and patients. Joanne Silberner examines the impact so far, and whether concerns have been borne out
PAEHRs in MHC may strengthen user involvement, patients’ autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.
Today’s adolescents and young adults have grown up immersed in technology, but their interest in and benefit from reading their care notes online is not well understood. In our study, the majority of AYA read notes and rated them as extremely important for several engagement and safety behaviours. Although a similar proportion of AYA reported definite or possible errors in their notes as adults, fewer spoke up about them, citing knowledge and cultural barriers like fear of conflict. Taken together, these findings support initiatives that encourage AYA to read notes and share concerns. Efforts that include note-reading may help transition patients from paediatric to adult care with greater autonomy, activation and safety partnership.
OurNotes interests patients, and providers experience it as a positive intervention. Participation by patients, care partners, clinicians, and electronic health record experts will facilitate further development.
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.
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.