The following articles changed our approach to healthcare. They started in us as a group a willingness and a certainty that being engaged and working with our care team was the best way to work together in partnership towards the best CF care and clinical outcomes for our children. If you havent read “The Bell Curve” by Atul Gawande, please do.
It used to be assumed that differences among hospitals or doctors in a particular specialty were generally insignificant. If you plotted a graph showing the results of all the centers treating cystic fibrosis—or any other disease, for that matter—people expected that the curve would look something like a shark fin, with most places clustered around the very best outcomes. But the evidence has begun to indicate otherwise. What you tend to find is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle.
One small field in medicine has been far ahead of most others in measuring the performance of its practitioners: cystic-fibrosis care. For forty years, the Cystic Fibrosis Foundation has gathered detailed data from the country’s cystic-fibrosis treatment centers. The Study below outlines the characteristics and practices of the best CF clinics in the US.
Do yourself a favour. Read both articles.
We also collect data in Australia through the CF Australia data registry although the data available stems from 2013 so it’s out of date and only presents data for each state individually. They don’t release the CF centre comparison data to parents or patients publicly either and the data is not compared against the CF centres in the US which would be really useful.
All good questions and hopefully something CF Australia is considering.