In a letter to the Patient-Centered Outcomes Research Institute (PCORI), the Partnership to Improve Patient Care (PIPC) offered feedback on PCORI's proposed research agenda. In the letter, PIPC Chair Tony Coelho doubled down on his recommendation that PCORI engage in direct outreach to organizations representing patients and people with disabilities in its forthcoming research efforts, noting that PCORI must be more specific and clear with respect to its methodologies. The letter also stresses that PCORI should work with experts that do not view the discriminatory quality-adjusted-life-years (QALY) metric as the "gold standard" for value assessment in health care.
"When health care decisions are made without reliable data on the experience of patients and their preferences, we have a systematic problem," wrote Chair Coelho. "The solution to that problem is a clear and credible source for decision-makers to not only directly access outcomes data meeting criteria for being patient-centered, but to also better understand when – or not – the outcomes data they are relying on is indeed credible and representative of diverse patient perspectives."
| pipc_pcori_2022_final.pdf |