OBJECTIVES: To explore the role of patient engagement in health economic model building and its impact on developing the Major Depressive Disorder (MDD) Open-Source Value Model (OSVM).

METHODS: A multi-stakeholder advisory group comprised of 20+ clinicians, health economists, patients, payers, purchasers, and researchers was established to provide input on configuration of the MDD OSVM through a series of meetings and key informant interviews. Webinars and public comment periods were conducted at various stages of model development to collect wider feedback on various aspects of the model. In addition, to inform the model on MDD patient preferences, a patient-level discrete choice experiment was conducted.

RESULTS: Feedback from MDD patients and patient advocates identified gaps in the model that emphasized the need to address patient priorities in these key areas: 1. Include costs related to delays in treatment, treatment switching, and medication adherence. 2. Integrate real-world data to effectively measure treatment outcomes, productivity loss, and caregiver burden. 3. Broaden the model to include MDD in addition to Treatment Resistant Depression. 4. Consider racial and ethnic disparities that have an impact on the MDD patient journey. 5. Update the user interface to enable non-technical users, such as patients, easy access to the model. The input received was evaluated by the advisory group and clinical and technical experts to explore the feasibility of incorporating these changes into the model. Changes to the model included adjusting the user interface, including additional cost variables such as transportation costs, and adding additional subgroups to race and ethnicity.

CONCLUSIONS: Capturing and implementing the patient perspective in the MDD OSVM facilitated open communication between health economists and patients, ensuring the model was patient-centered and provided transparency. Further research on MDD is needed to address data gaps that are important to patients, such as caregiver burden, societal costs, and equity.