Understanding the Challenges and Opportunities of Patient-Centric Outcomes
Across the continuum of drug discovery, development, and delivery there’s a growing effort to incorporate the patient perspective into the process. Last year FasterCures, the nonprofit focused on accelerating and improving medical research, held a multi-stakeholder workshop to discuss the challenges and opportunities of patient reported outcomes and how to make them a more powerful tool for incorporating patients’ perspectives into R&D and care decision-making. A new report from the organization captures the results of that workshop. We spoke to Cynthia Grossman, director of science of patient input at FasterCures, about the report, why patient reported outcome measures and patient-centric outcomes are not one and the same, and what can be done to better reflect what matters to patients.
Geospatial data analyst, strategist & quantitative storyteller creating narrative around climate science and the physical-cultural-ecological facilities required for sustainable operation of infrastructure.
6 年I will throw a data wrench into the discussion. A few random thoughts from my experience as a survey developer integrating robust research methodology. Many of the legacy patient outcomes need to be tossed out with the bathwater. Clients hesitate to be so bold because of the cost of validating new instruments--therefore they rely on outdated instruments. We also need to be careful when talking about pain and measuring specificity. Specificity measures patients not in pain, not being measured as having pain. Sensitivity means that patients experiencing pain are measured on the pain instrument or tool as having pain. Many patient reported outcomes have been created for clinical trials not real world applications. For example, if you want QoL on the label, you need to measure it as an endpoint (also problematic). I try to field the existing outcomes to actual patients and in most cases--they do not measure or align with the free text concerns captured in the earlier qualitative interviews. As a data analyst, naturally the foundation for good data depends on relevant questions. The secret sauce is to measure more variables and create wide data. Otherwise we risk losing the heterogeneity of patient populations because we continue to create large buckets in broad categories and then proceed to aggregate the findings--losing the power of the patient-centered approach.
Mindful Innovation Labs | HCD Expert | Executive Advising | Royal Society of Arts Fellow
6 年Awesome, Cynthia!
Program Leadership | Social and Behavioral Research | Patient Engagment| Real World Evidence | Digital Health
6 年Thanks for the opportunity Danny!