Currently, we are raising money to help fund research into how best to meet the needs of patients after medical harm occurs. However, one thing these podcasts do not explore is why we are raising money ourselves for this research, and since we’ve had some inquiries about why we need to fundraise for a research study of this caliber, i.e, why there isn’t “already” funding available, we thought we would address that here.
In a nutshell, the big funders are unavailable to us for this longitudinal, qualitative study on patient safety. In spite of the millions of patients who have died/are dying due to medical error, the CDC does not consider medical error a reportable cause of death—only diseases, illnesses, and injuries are accepted as causes of death. The NIH (National Institutes of Health) funds studies focused on specific diseases, looking at things like cancer and heart disease. Since medical error is not considered a disease, our current study does not meet NIH funding criteria.
AHRQ (Agency for Healthcare Research and Quality) requires that there already be pilot data on a given research topic in order to receive funding—but there is insufficient data on this topic. In other words, the funding provided to support “our” research now will position the work for large-scale funding down the road.
PCORI (the Patient-Centered Outcomes Research Institute) compares intervention effectiveness, but again, there is a dearth of information on the effects of medical harm as it is occurring and over time, as well as on how that information relates to CRPs, so no comparisons can be made. In other words, the research Talia’s Voice is sponsoring is the first of its type, ironically making it difficult to find the initial funding—but our study will become the basis for future studies on patient harm and medical errors.