Adapting Clinical Systems to Enable Adolescents' Genomic Choices

Area of Science:

• Genetics
• Bioinformatics
• Health Informatics

Background:

• Adolescents were offered personalized choices regarding which genetic results they wished to receive from a research study.
• A workflow was developed to filter and transfer these genetic results to the electronic health record (EHR).

Purpose of the Study:

• To describe the adaptations necessary for documenting and returning genetic results in the EHR according to adolescent preferences.
• To ensure returned results accurately reflected adolescent choices and were accessible to adolescent/parent dyads.

Main Methods:

• A web application was utilized for manual modification of laboratory report data based on adolescent preferences.
• A custom EHR form was created to display discrete genetic results in the patient portal, as PDF reports were not directly viewable.

Main Results:

• The process of enabling personalized genetic result choices was labor-intensive, requiring over 350 development hours and 50 hours of study professional time for data entry.
• Adolescents and parents who received genetic results via the patient portal reported satisfaction and willingness to use the system again.

Conclusions:

• Future EHR upgrades are needed to allow patient portal access to PDF reports and enable filtering/partitioning of genetic results based on patient preferences.
• Separating genetic results into discrete EHR components can support clinical decision support and artificial intelligence applications.