Data Segmentation Challenges Impede Pediatric Data Sharing, Confidentiality

Barriers to pediatric data sharing include data segmentation and technical infeasibility, according to a JAMA Network Open research letter.

The Information Blocking Final Rule of the 21st Century Cures Act mandates that patients have immediate electronic access to portions of their medical data. In pediatric care, challenges to information exchange include differential proxy access for guardians of children and varying state laws on adolescent consent and confidentiality rights.

To address the various barriers to pediatric data sharing, 16 organizations that provide care to children and adolescents in California created a statewide pediatric work group called the California Pediatric Informatics Collaborative.

Researchers conducted semi-structured interviews with 13 of 16 organizations. All 13 participants agreed on which information should be electronically released to pediatric patients younger than 12 years and their proxies in an ideal state of data sharing.

Within all content (including sensitive content), organizations varied in the components they could technically segment; 92 percent created a sensitive note type, 85 percent segmented sensitive laboratory studies, and 62 percent withheld sensitive imaging results. Segmentation of sensitive problems (46 percent), medications (15 percent), and immunizations (8 percent) was lower.

All institutions recognized technical infeasibility as a barrier and reported that they could only electronically share a partial list of sensitive and nonsensitive content from each category.

Based on their interviews, the researchers identified six themes and challenges to implementing pediatric data sharing.

1. Technical infeasibility: Organizations noted an inability to segment components of data on a granular level when they are deemed confidential. Additionally, they referenced the inability to set different release patterns for the patient and the patient’s proxy. While EHR vendors provide support for interpreting law, they have not yet released many technical build upgrades, the researchers said.
2. Sensitive information leak: Institutions said that understanding where pitfalls are in protecting sensitive information is challenging. For instance, smart links pulling an extensive list of medications into the EHR note may unknowingly release confidential information.
3. Permissive release of information: Organizations noted the need to turn on sharing of confidential info when the adolescent patient has provided informed consent.
4. Concern for inappropriate proxy access: Participants pointed to concerns that parents or patients’ proxies are accessing adolescent patients’ accounts. Workflows are needed to allow the deactivation of adolescent accounts when it appears that the proxy has control of info.
5. Cultural awareness and education: They said continued education for providers about laws surrounding confidentiality and training on documentation workflows is needed.  
6. Legal complexity: Lastly, the organizations noted the need to clarify what a psychotherapy note in the EHR can and cannot include, guided by state laws. Local interpretation of the law by independent organizations varies.

“The creation of the California Pediatric Informatics Collaborative promoted early collaboration among important stakeholders across the state with regard to deciphering the 21st Century Cures Act final rule in the context of California state laws on adolescent consent. Participating organizations praised the sharing of both the general approach to data sharing and specifics about the technical capabilities of the data sharing portal,” the research letter authors wrote.

“Continued collaboration is necessary to identify a unified approach to health information sharing that will empower patients while protecting adolescent confidentiality,” they continued. “The creation of novel technical capabilities by electronic health record vendors to allow granular segmentation of data release will be important in this process.”