HOW DO WE MEASURE SUCCESS? It seems that we are currently lacking centralized, accurate, high-level progress metrics in childhood cancer. How do we know, year over year, if our countless programs/projects are actually moving the needle? Unless I'm missing something, I believe we need a centralized, easy to read, childhood cancer DASHBOARD, that counts EVERY child diagnosed, and includes very basic but highly accurate data/metrics like: # patients diagnosed overall, by disease/diagnosis, home geography/location, disease subtype/genomics, relapse rates/info, death information (date, cause(s)), treating institution data (outcomes by institution -- parents deserve this data, critical in high-risk cancers!), current disease status -- a patient "census" if you will so we can see, at a high level, what's happening across institutions and trials to our kids. Success metrics could also include, at a high level, the # of new trials/drugs, by disease, launched per year. There's an old saying, "you can't manage what you can't measure"...I believe we need to invest in some accurate, easy to interpret, overall success metrics to determine if our researchers, clinicians, institutions, funders and programs are actually IMPROVING OUTCOMES overall. We are busy doing many things, but, are we actually putting points on the board...hard to tell, from my perspective.
Idea No. 943