The Data Mine: Value Assessment Organizations Should Learn from the Experts on Patient Engagement
Dr. Steven Pearson, founder and president of the Institute for Clinical and Economic Review (ICER), recently wrote that no clear framework exists to engage patients in medical research. In A proposed framework for patient engagement throughout the broader research enterprise, published in the Journal of Comparative Effectiveness Research, Dr. Pearson acknowledges that patient engagement is an important component of medical research, but he fails to recognize years of accomplishments in the field. This misleading premise ignores rigorous patient-centered outcomes research and evolving development of evidence-based frameworks for patient engagement.
On Jan. 31, the Institute for Clinical and Economic Review (ICER) released its final revisions to its value assessment framework. The document describes changes in ICER’s process, including creating a formal process for incorporating new evidence that emerges after the assessment, standardizing cost-effectiveness thresholds across reviews, and increasing the incorporation of real-world evidence.
An Independent Federal Agency Recognizes the Threat of QALYs and Reference to International Prices That Rely on Them: A Summary of the NCD Report
The National Council on Disability (NCD)’s report to President Donald Trump on Quality-Adjusted Life Years and the Devaluation of Life with a Disability provides a timely understanding and perspective of the implications of QALYs. This report will be an essential tool for advocates, coming from an independent, nonpartisan federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
The Institute for Clinical and Economic Review (ICER) recently assessed two treatments for spinal muscular atrophy (SMA), a rare and deadly genetic condition impacting 1 in 11,000 newborns each year. In the absence of therapy intervention, death or the need for constant ventilation to breathe before the age of two years is the outcome for more than 90% of individuals diagnosed with SMA Type 1. SMA is the number one genetic cause of death for infants.
The Data Mine: Tufts University Study Highlights Failure of Cost Effectiveness Analysis to Account for Variability Among Patients