Guiding Principles for Information Sharing and Blocking in Pediatric Care

These Guiding Principles assume a scenario in which a clinician/practice/health system is determining how to respond to a request for electronic health information (EHI) from a patient or parent/guardian.  

• Patient health, safety, and well-being is the top priority for clinicians and health systems.  
• Information sharing facilitates stronger communication and improves care through increased patient and family engagement. 
• Pediatricians and health systems should take a pro-sharing approach, making appropriate access to EHI for patients, parents and guardians as easy as possible. 
• Pediatricians and health systems must not impose patient fees for electronic access to EHI (including implementation of/use of a patient portal). 
• Respecting and maintaining adolescent confidentiality is imperative for the health and well-being of adolescent patients.  
• All EHI has the potential to be sensitive, depending on context. Pediatric patients, including adolescents, are unique in that their legal rights to provide consent and receive confidential care are limited or non-existent. The AAP supports allowing pediatricians and other clinicians who provide health care for children and adolescents, and who are stewards of EHI for those patients, to be granted discretion and latitude to withhold EHI when they are concerned about the impact/consequences for the child.   
• For many pediatricians, the EHR technology available to them does not support the level of data segmentation necessary to adhere to accepted best practices for patient confidentiality. If the Privacy Exception and the Preventing Harm Exception can be reasonably applied to the EHI, it may be appropriate to claim the Infeasibility Exception if data segmentation functionality is not present. Per the Final Rule FAQ, “Such individualized determinations made in good faith by an ordering clinician, in the exercise of their professional judgment and in the context of the treatment relationship within which they order the test, would satisfy the type of risk and type of harm conditions of the Preventing Harm Exception.” 
• Not all patient health information is created equal. The mechanism/process of sharing is as important as the data itself. The AAP supports: 
  • Proactively sharing (pushing) as much appropriate EHI as possible to platforms such as patient portals or patient-selected apps, without requiring additional action by patients. 
  • Establishing in-house procedures for providing additional EHI to appropriate recipients upon request.
  • Establishing and documenting protocols and rationales for EHI that will NOT be shared with patients (or parents/guardians), even if it is requested.  
• Clinicians, practices and health systems should be proactive in communicating their EHI sharing and withholding protocols with patients and families. It may be helpful to have standard language to respond to requests for EHI that will have a delayed release, as well as for EHI that will not be shared electronically.  
• Health data and health information are not equivalent. In some cases, sharing EHI without context or explanation (e.g., pushing a lab result without a discussion or message from the clinician) may be confusing, stressful or otherwise harmful to the patient. Pediatricians may want to consider providing “anticipatory guidance for results” to prepare patients for potential outcomes. 

Additional AAP Resources

• AAP Cures Act Final Rule Overview
• Pediatric Information Blocking Use Cases
• EHRs for Pediatricians
• Adolescent Confidentiality: What Has (and Hasn’t) Changed with Cures? (AAP Webinar; September 2022)

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