The 21st Century Cures Act and Multiuser Electronic Health Record Access: Potential Pitfalls of Information Release

Abstract

Although the Office of The National Coordinator for Health Information Technology’s (ONC) Information Blocking Provision in the Cures Act Final Rule is an important step forward in providing patients free and unfettered access to their electronic health information (EHI), in the contexts of multiuser electronic health record (EHR) access and proxy access, concerns on the potential for harm in adolescent care contexts exist. We describe how the provision could erode patients’ (both adolescent and older patients alike) trust and willingness to seek care. The rule’s preventing harm exception does not apply to situations where the patient is a minor and the health care provider wishes to restrict a parent’s or guardian’s access to the minor’s EHI to avoid violating the minor’s confidentiality and potentially harming patient-clinician trust. This may violate previously developed government principles in the design and implementation of EHRs for pediatric care. Creating legally acceptable workarounds by means such as duplicate “shadow charting” will be burdensome (and prohibitive) for health care providers. Under the privacy exception, patients have the opportunity to request information to not be shared; however, depending on institutional practices, providers and patients may have limited awareness of this exception. Notably, the privacy exception states that providers cannot “improperly encourage or induce a patient’s request to block information.” Fearing being found in violation of the information blocking provisions, providers may feel that they are unable to guide patients navigating the release of their EHI in the multiuser or proxy access setting. ONC should provide more detailed guidance on their website and targeted outreach to providers and their specialty organizations that care for adolescents and other individuals affected by the Cures Act, and researchers should carefully monitor charting habits in these multiuser or proxy access situations.

Real-Time Patient Portal Use Among Emergency Department Patients: An Open Results Study

“…The Office of the National Coordinator for Health Information Technology's (ONC) Final Rule implementing the 21 st Century Cures Act and its provision on information blocking went into effect on April 5, 2021, expediting the release of test results to patients via patient portals across the United States. [1][2][3][4] While the Cures Act defines the concept of information blocking in practice, the Final Rule created the corollary practice of information sharing, consisting of the immediate release of electronic health information contained within the annually updated US Core Data for Interoperability standard data set. 5 This practice is colloquially known as open notes and open results for clinical notes and test results, respectively.…”

The 21st Century Cures Act and psychosocial electronic documentation in solid organ transplantation: Potential harms and practical strategies

“…It is uncertain what such “harm” entails but its clinical threshold must be far beyond people becoming upset at what they read 5 . Domains of potential harm from EHI access likely include patient MH, substance use, physical or sexual violence, and caregiver MH, among others 8 . Hypothetical harmful consequences include avoided or delayed medical care, clinical deterioration, overdose, continued addiction, family strife, and danger to clinicians 8 …”

“…8 Hypothetical harmful consequences include avoided or delayed medical care, clinical deterioration, overdose, continued addiction, family strife, and danger to clinicians. 8 While it remains unclear which psychiatric patients could be at risk for adverse events after reading their clinicians' notes, vulnerable patients might be those with suicidal or homicidal ideation, personality disorders, substance use disorders (SUD), psychosis, or posttraumatic stress disorder. 5,9 Counterfactually, concealing psychiatric EHI may be harmful by increasing stigma, further removing patients from their care who are already suffering healthcare disparities, and yielding deeper patient mistrust toward a healthcare system in which they may already be marginalized.…”

“…5 Domains of potential harm from EHI access likely include patient MH, substance use, physical or sexual violence, and caregiver MH, among others. 8 Hypothetical harmful consequences include avoided or delayed medical care, clinical deterioration, overdose, continued addiction, family strife, and danger to clinicians. 8 While it remains unclear which psychiatric patients could be at risk for adverse events after reading their clinicians' notes, vulnerable patients might be those with suicidal or homicidal ideation, personality disorders, substance use disorders (SUD), psychosis, or posttraumatic stress disorder.…”

It’s time to change our documentation philosophy: writing better neurology notes without the burnout

“…Federal legislation under the 21st Century Cures Act provides patients access to notes without delay and charge by April 5, 2021 ( 21 ). The OpenNotes initiative seeks to provide patients with access to their medical records ( 22 ) to improve their understanding of their condition and give patients more control of their treatment plan. Open communication with the patient during the visit combined with succinct understandable notes supports co-ownership of medical problems by patient and clinician ( 23 – 28 ).…”