Examples of Results Reporting Successes
Founded in 1955, the Cystic Fibrosis Foundation (CFF) was the thrust behind collecting results data for this children’s disease. Since they began, the lifespan for patients have improved from 10 years in 1966 to 18 years in 1972 and to 33 years in 2003! These improvements occurred even though results are not published by clinic (They call this ‘blinded for individual centers’).
Results reporting is voluntary, but the CFF offers grants to clinics to collect the data. They publish a registry that they estimate holds data on 93% of patients. Interesting to note -- the best performing clinics continue to have patients that live the longest. Sure would be nice if all children, regardless of which clinic they went to, could benefit from longer lives. But that will only happen once we get results data on an individual basis.
When kidney dialysis was first developed in the 1970s, it was too expensive for most – only extremely rich people could afford this service. But the American Association of Kidney Patients showed dialysis for patients with end stage renal disease (ESRD) not only survived with dialysis, but could even live normal lives. No dialysis meant death.
Congress heard – they enacted the ESRD Act in 1972. This covered all ERSD patients under the age of 65 for dialysis under Medicare. In 1978, Medicare came up with an oversight plan. They charged a $0.50 fee, taken from the reimbursement, to pay for regional administrative networks. In 1988, "the US Renal Data System (USRDS) was established to collect, analyze, and disseminate data about ESRD outcomes to foster research and to monitor quality."
Until Medicare required results reporting, hardly any reviews were conducted. By tying the reporting to reimbursement, Medicare made results reporting happen for ESRD patients. This data was public and not blinded. Patients and doctors alike could look at specific results like anemia, hemoglobin, and mortality rates for all providers except the Veterans’ Administration, which is not covered by Medicare. If a provider slips below accepted standards, the network sends out coaches.
The upside is: outcome data is mandatory. Unfortunately, it’s limited to 5% of patients from October to December due to the paperwork involved.
(This demonstrates another aspect of improving healthcare: We need to get medicine into the 21st century. Right now, you can’t email your doctor – after all, they’re not paid to read emails; you have to go and pick up your x-rays – they’re not digitized; you have to fill out the same forms over and over again from one doctor to the next – because they’re not kept and shared electronically. Electronic data collection could not only make complete results reporting viable, but also cut some of those redundant costs.)
From 1989 to 1997, mortality rates have improved by 17% for dialysis patients. In addition, results also "revealed that attention to quality is crucial for cost reduction." So not only could we end up with better care, but also, less expensive care as well. This is something we’re used to in electronics (like computers, which get cheaper, faster and more powerful all at the same time). Well, now we have to get healthcare to follow the same pattern of success!
More successes to come...
