Pediatric Information Blocking Use Cases

Information Blocking Exceptions: Pediatric Use Cases

Adolescent Clinical Data
• Adolescent clinical practice has unique needs in the management of their data to support best practice (see AAP policy statement on Standards for Health Information Technology to Ensure Adolescent Privacy)
• Currently, adolescents’ right to privacy is determined by jurisdictional law (Read more from the Guttmacher Institute).  
• The wide variability in adolescent consent for care and confidentiality laws across states and jurisdictions makes it especially challenging to implement adolescent confidentiality in EHRs and other health IT tools.  
Guiding Principles for Adolescent Clinical Data: 
• Adolescent patients should have access to their clinical data independent and separate from their parents/guardians.  
• Full release of all EHI to adolescents is not necessarily a solution. In some states (e.g., California), adolescents cannot have access to non-confidential health information without parental consent. 
  • There have been documented instances of guardians using an adolescent’s portal login to access their child’s health information. It is reasonable to establish security protocols to verify the identity of a requestor.  
• Laws vary by state/jurisdiction. The need for confidentiality between adolescent patients and their clinicians goes beyond what is allowable under most existing federal and jurisdictional laws. Clinicians should be granted discretion in determining which EHI to withhold, under what circumstances, to best support the health and well-being of their adolescent patients. 
• All patients have the right to share their clinical data as they see fit. 
Applicable Information Blocking Exceptions for Adolescent Clinical Data: 
• Preventing Harm Exception: 
  • Adolescents may be at risk of physical harm if their clinical data is shared with their guardians (for example: adolescents who are likely to be physically abused by a guardian upon disclosure of sexual activity; an adolescent who is kicked out of their home upon disclosure of sexual orientation). 
  • Adolescents may be at risk of physical harm if they DO NOT SEEK CARE because of concerns about confidentiality (e.g., untreated STI).  
• Privacy Exception 
  • If an adolescent’s right to confidentiality is protected by existing law(s), it is not Information Blocking to withhold the covered EHI from the patient’s guardian(s). 
• Infeasibility Exception: 
  • When an EHR cannot segment EHI that meets one of the other exceptions (i.e., all labs are treated the same by the EHR), EHI can be withheld under this Exception. 
  • This may apply to several EHI classes, where it may not be possible to segment out information that is protected by confidentiality laws. Examples include: birth control pills on a medication list; results of a pregnancy test; results of a chlamydia test. 
Maternal Clinical Data
• Newborn care requires knowledge of maternal health data for safe, effective, equitable, and timely treatment. For example, neonatal abstinence syndrome because of maternal opiate use or vertically-transmitted newborn infections, which change the newborn’s risk and the specific care provided to them.  
• Currently, the health IT community (including clinicians, developers, etc.) does not have shared, agreed upon rules about what needs to be segmented and how that should happen.  
• Maternal information sharing may be poorly publicized to maternal patients, and those patients may/may not be aware of their ability to request confidentiality under HIPAA. 
 Guiding Principles for Maternal Clinical Data 
• In the case of maternal health information, the clinical data belongs to both the mother and the newborn. It is relevant to the care of both patients. Data transformation must be considered: maternal health history becomes part of the infant’s family health history. 
• To preserve an effective therapeutic relationship, it may be necessary to place maternal history data in the child’s chart in a way that supports the child’s care, but is not visible to parents/guardians. Protecting maternal health information allows the clinical team to support the mother’s privacy and adhere to jurisdictional laws and HIPAA. 
• Which maternal EHI is potentially sensitive should be determined by the clinical team, and mothers should be made aware of their rights to have sensitive information kept confidential. Potentially sensitive data about the child’s family members contained in the child’s chart may be withheld from EHI requests.  
• Existing health privacy law allows for a person other than the patient (i.e., a parent) to request health information they provide to be kept confidential from the patient, if disclosing the information would be likely to reveal the sources of that information (per HIPAA: 45CFR 164.524(a)(2)(v)). 
Applicable Information Blocking Exceptions for Maternal Clinical Data 
• Privacy Exception:  
  • The Privacy Exception may be applied to support blocking maternal health information in a pediatric patient’s record.   
• Infeasibility Exception:  
  • Technology is not readily accessible to segment allowable maternal data from notes in the infant’s chart. 
  • Without the ability to separate newborn and maternal data, sharing the newborn data may compromise maternal data. 
Child Abuse Clinical Data
• Child abuse clinical data can present risk to the patient (example: the address or information about who will be caring for a child who is placed in a protective home). 
• In legal situations, depending on jurisdictional law, disclosure of EHI may need to be shared beyond the appropriate parent or guardian (i.e., law enforcement officials or lawyers). 
Guiding Principles for Child Abuse Clinical Data 
• Clinical records associated with child abuse cases have always had different sharing requirements. Information sharing standards for these especially vulnerable patients need to have additional guardrails so as not to increase harm to the child.  
Applicable Information Blocking Exceptions for Child Abuse Clinical Data: 
• Preventing Harm Exception: 
  • In the case of child abuse, a policy utilizing the Preventing Harm Exception would be considered appropriate. 
  • It is reasonable (and in the best interest of the child’s health and welfare) for clinicians and/or health systems to withhold EHI in cases of child abuse/suspected child abuse within the parameters of the Preventing Harm Exception. 
• Privacy Exception: 
  • If the information is protected by state/jurisdictional or other existing privacy laws, withholding that information would not be considered Information Blocking.  
• Infeasibility Exception:  
  • If technology is not readily accessible to segment allowable EHI that meets other Exceptions, the Infeasibility Exception may be appropriate. 
Additional Resources on Information Sharing and Blocking
• Adolescent Confidentiality: What Has (and Hasn’t) Changed with Cures?
• AAP Policy Statement:Electronic Communication of the Health Record With Pediatric Patients and Their Guardians
• AAP Policy Statement:Electronic Documentation in Pediatrics: The Rationale and Functionality Requirements
• Information Blocking FAQs 
• Information Blocking Exceptions
  
• Information Blocking Resource Center
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