In developing disease-specific value models for the Open-Source Value Project, both patients and patient groups provide critical methodological review, make important recommendations and suggestions, and work closely with IVI researchers in the development of value tools and supporting research. For example, IVI has benefitted from support groups such as The Global Healthy Living Foundation’s Creaky Joints and the LUNGevity Foundation, which supported development of the IVI-RA and IVI-NSCLC models, respectively.

These partnerships are only the start. The ongoing contributions of patients and patient groups are critical to guiding the continued development of IVI’s open-source models. We are always looking to forge new collaborations with patients and patient stakeholders as the models evolve.

In developing open-source value tools, IVI conducts focus groups with patients and receive direct input from patient partners that help us identify and incorporate important and sometimes overlooked attributes of 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), are incorporated into the multi-criteria decision analysis (MCDA) framework on the current models. However, some important attributes, such as out-of-pocket costs or impacts on caregivers, cannot currently be included due to a lack of reliable data or gaps in available methods. These missing pieces point the way toward areas for future development and help to set IVI’s future research agenda.

Value assessments are often based on simulations of “average” patients, where outcomes are simulated based on population-level parameters. Open-Source Value Platform models are patient-level simulations, meaning 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.

The role of patients in IVI’s Open-Source Value Platform models does not end with the release of a new disease-specific model. We see patients as partners who play a central role in the ongoing improvement of our models specifically, and methods for value assessment more generally. Patients help guide IVI’s iterative model improvements and research agenda through input during the Open-Source Value Platform public feedback and iterative revision process, which puts patients on equal footing with other stakeholders. Moreover, patients serve as a part of the independent Technical Expert Panel that provides prioritized recommendations for future model developments based on public feedback.