Patients as Active Contributors
In developing Version 1 of the IVI-RA model, both patients and patient groups like The Global Healthy Living Foundation’s Creaky Joints provided critical methodological review, made important recommendations and suggestions, and worked closely with IVI researchers in the development of the IVI-RA Value Tool.
With the beginning of the Open-Source Value Project public feedback and iterative revision process, the role of these early-phase patient partners continues to be central – for example, serving as a part of the independent Technical Expert Panel that provides prioritized recommendations for future model developments based on public feedback.
These early partnerships are only the start. The contributions of patients and patient groups will be critical to guiding the ongoing development of IVI’s open-source models. We are always looking to forge new collaborations with patients and patient stakeholders as the models evolve.
The Patient Perspective
The patient perspective is central to IVI’s work.
Capturing Determinants of Value Important to Patients
In developing the IVI-RA Value Tool, we conducted focus groups with RA patients and received direct input from patient partners that helped us identify and incorporate important and sometimes overlooked attributes of RA treatments that patients care about. Some attributes, like how a drug is administered (as pills versus intravenous, for example) and how long a drug has been on the market (and therefore accumulating data on real-world safety), were incorporated into the multi-criteria decision analysis (MCDA) framework in the IVI-RA model. Some attributes, like out-of-pocket costs or side effects other than serious infections, are not yet incorporated due to lack of reliable data or gaps in available methods. These missing pieces point the way toward areas for future development.
As we define value…we must be sure that value assessments adopt the patient perspective. Assessments must be salient to the decisions that patients make in choosing and using health care.
Reflecting Patient Diversity
Value assessments are often based on simulations of “average” patients, where outcomes are simulated based on population-level parameters. The IVI-RA model is a patient-level simulation, meaning that the model simulates a population of individual patients, each with their own characteristics, simulated disease course, treatments, and outcomes. As data on patient-reported outcomes and real-world evidence on treatments improve, this type of approach will move ever closer to fully individualized value assessment.