New Recommendations Aim to Protect Electronic Communication of Pediatric Health Records

By Will Boggs MD

June 20, 2019

NEW YORK (Reuters Health) - A new policy statement from the American Academy of Pediatrics (AAP) offers several recommendations intended to safeguard the communication of pediatric electronic health records (EHR) with patients and their guardians.

Many professional medical organizations strongly recommend access to health data via electronic means, but healthcare teams, pediatric patients of all ages and guardians lack guidance to effectively and safely use technology for electronic communication about health record information.

Dr. Emily C. Webber of Indiana University, in Indianapolis, and colleagues from AAP detail various challenges for EHR communication and provide recommendations for physicians and healthcare teams, traditional policymakers and healthcare organizations, and federal policymakers and health-information technology (HIT) developers in their policy statement, released June 17 in Pediatrics.

The main challenges, they suggest, include variable laws and regulations and rapidly changing non-EHR electronic communications; variable definitions of a health record; variable maturity of pediatric patients and guardianship roles as well as age of majority; limited pediatric functionality capabilities of existing EHRs and other HIT; and privacy and confidentiality needs of adolescent patients.

Among the nine recommendations for various stakeholders, the first stresses that healthcare teams should use secure platforms that protect communications with patients and guardians.

Institutional policies should include a communication agreement between healthcare teams and patients and/or guardians to support safe and effective electronic communication of health record information, and there should be systems in place to ensure that healthcare teams comply with state and federal standards, rules and regulations.

Standard EHR functionality should include the capacity for healthcare teams and patients to filter clinical data that can compromise confidentiality, as well as the ability to restrict electronic communication in cases of acute patient safety risk (for example, when guardianship changes in cases of child abuse and neglect).

The ultimate goal is for physician-patient relationships to have clear expectations and safeguards for patients, guardians, and healthcare teams in electronic communication of health record information, the authors say.

Occupational therapist Joanne Maxwell of the University of Toronto and Holland Bloorview Kids Rehabilitation Hospital, in Canada, who has researched various uses of EHR in pediatric and pediatric-to-adult healthcare transition, told Reuters Health by email, "If we allow healthcare teams/organizations and providers to decide what gets shared in an EHR portal and what does not, we are in great danger (in my opinion) of choosing to share less information under the guise of protecting patients' privacy, where in reality it might be more about preserving current provider documentation habits."

"I support mechanisms to restrict some information in cases where the patient and their guardians share access (to protect the privacy of the patient, and sometimes also to protect the privacy of the parent)," said Maxwell, who was not involved in the new guidance. "However, I think there need to be clear guidelines and expectations around how this is done, such that individuals and teams do not decide to restrict certain kinds of documents, without full transparency as to the rationale, and some mechanisms for auditing."

"I also believe that we need to do a better job in ensuring developing youth understand their right to severing a guardian's access to their record," she said. "I work in an environment where many of our pediatric patients have some limitations to cognitive development, and we may assume ongoing consent for parent access without sufficiently informing the patients."

"Patient and caregiver access to EHRs is a reality, and if we are not changing and evolving our clinical and communication practices to adapt to this reality, we are missing out on potential opportunities to engage our patients in their own care, ensure that our patients and families are well-informed, and potentially improve outcomes as a result," Maxwell said.

She added, "Pediatric organizations have a big challenge ahead in striking the right balance when it comes to ensuring ongoing consent of the developing youth. Some organizations will automatically sever access at regular intervals (e.g., 16 and 18) if a new consent document (mailed to the patient's home) is not signed. Though this is better than nothing, I don't think this necessarily ensures that the young person understands their rights."

Dr. Webber did not respond to a request for comments.


Pediatrics 2019.