As chairman of the Partnership to Improve Patient Care and an epilepsy patient myself, I can appreciate why people are concerned about how information may be misused to limit their treatment options. I use a specific drug that effectively manages my epilepsy. It probably would not be considered the most cost effective, or even the most clinically effective for the average patient — but I am not the average patient.
PCORI has had a tough road to overcome a cultural, institutionalized bias relying on researchers to drive the research agenda in health care. Although PCORI initially adopted a funding process similar to other federal agencies, it is a significant step in the right direction that PCORI is shifting research funding toward topics that are driven by patients and clinical experts through advisory panels and by convening stakeholders in roundtables. This is the kind of research that patients and providers are most likely to use, if communicated effectively.
PIPC’s members, including a variety of patient and provider stakeholders, will continue working to support development of high-quality, patient-centered CER by PCORI. In the year ahead, PIPC looks forward to engaging with PCORI on its plans to better communicate research findings to doctors and providers, in a manner that is perceived as valuable to their health care decision-making, as opposed to being implemented in a manner that limits their choices.