Development of a Patient-Facing Portal for the Receipt, Interpretation and Tracking Utility of Pharmacogenetic (PGx) Data

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ABSTRACT Selection of medication for mental illness is generally through trial-and-error, with high rates of adverse reactions and sub-optimal efficacy. Pharmacogenetic (PGx) data is thus of particular benefit to facilitate selection of safe and effective medications and is cost effective, decreases resource utilization, and improves patient engagement, with the potential to overcome medication non-adherence. Nevertheless, in the field of psychiatry, patients' familiarity with PGx remains low, demonstrating the need for improved patient-facing PGx materials. The objective of this project is to enhance sustained patient engagement with their genomic information by: a) increasing patient understanding of PGx results by developing a consumer-focused patient report; and b) facilitating patient-provider communication and shared decision making using PGx-guided medication selection on an ongoing basis by increasing patient self-reporting of psychiatric symptoms using regularly administered psychometric scales that are communicated to healthcare providers in real time. This ongoing self-reporting will serve as the entry point to discussions regarding changes to medication regimens, which will be explained to patients using the consumer-focused PGx report. Ongoing and consistent patient-provider communication is known to reinforce patient engagement, further encouraging patient use of the tracking system. Provider use will be encouraged through the billing codes available for remote patient monitoring. This project has three Specific Aims. Aim 1 is to develop a PGx report that is more accessible to individuals without a biomedical background. The Professional PGx assay report will be adapted using the AHRQ Health Literacy Universal Precautions Toolkit, following which a user comprehension study will be conducted to assess understanding of the report by lay individuals. Aim 2 is to integrate outcome tracking scales within the patient portal to support voluntary tracking of patient outcomes longitudinally and ongoing shared decision making with healthcare providers. For this aim, diagnosis-specific psychometric scales will be integrated into the patient platform, together with a patient reminder system that will send text/email reminders to patients every 2 weeks with a link to the psychometric scales, as well as a reminder system for a designated community member to further encourage patient engagement. An alert system will also be developed to notify patients and designated community members if scores change by >30% between evaluations, prompting the patient to speak to their healthcare provider. User acceptance testing (UAT) will be performed to verify that the systems operate as intended. Aim 3 is to develop an application programming interface (API) to report patients’ longitudinal psychometric scoring directly to the healthcare provider portal to facilitate patient-provider communication and ongoing PGx-guided medication choice. A provider alert system based on patients’ self-reported outcomes, including indications of suicidality, will also be developed, followed by UAT. Successful project completion will, for the first time, combine longitudinal patient outcome tracking and PGx guidance, for both patients and providers, in the mental health field.