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.
Highlights
21st Century Cures Act; Open Notes; Information Blocking; multiuser EHR access; proxy EHR access; adolescent Health; health IT Policy; information technology; cures act; electronic health record; electronic health information; health information; patient care
We examine the potential for patient harm by the Office of The National Coordinator for Health Information Technology’s (ONC) Information Blocking Provision in the Cures Act Final Rule and the additional burden that health care providers, those who provide patient care and provide documentation in the electronic health record, will face when documenting sensitive information
J Med Internet Res 2022 | vol 24 | iss. 2 | e34085 | p. 7 educated on the application of this rule and an institution’s policies and procedures. In light of these concerns, we recommend that ONC provide more detailed guidance both on their website and targeted outreach to health care providers caring for patients in the adolescent health setting and other multiuser or proxy access situations
Summary
“Primum non nocere” (“First, do no harm”) or nonmaleficence is a fundamental principle taught to every health care provider. The Information Blocking Provision of the Cures Act Final Rule mandates that patients have unfettered, free access to their EHI, and provides clear requirements for compliance by health care providers, institutions, health information exchanges, and EHR vendors [8]. The other exception to the Cures Act Final Rule’s patient access provision immediately relevant to health care providers is the privacy exception Under this exception, interfering with access to EHI is deemed not to be information blocking when the intent is to protect the patient’s privacy. The Cures Act Final Rule explicitly states that maintaining confidentiality and protecting relationships is not sufficient to prevent the release of sensitive information, the effects of releasing this information on patients, their parents or legal representatives, and the patient–provider relationship cannot be underestimated and are concerning to adolescent medicine providers and other health care providers who care for youth [30]. The hospital system can deactivate proxy access; this may be burdensome and can be delayed depending upon institutional implementation
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