Week 7

     Working this summer on all of the clinical data registries throughout UW Medical Center gave me an appreciation for just how much data is out there and gets sent around to a variety of organizations.  However, I'd like to start with addressing the information at the beginning of the case study pertaining to filling out forms.  Before my current position I worked the front desk at an Urgent Care clinic and was responsible for collecting paperwork from individuals.  Over the course of the time I worked there we shifted from a "need to have a form filled out once a year" to "need to have a form filled out once period".  This shift prevented me from having a lot of extra stress in my job.  The argument that we need to ensure that none of your information has changed is valid but extremely frustrating for someone who has lived in the same house with the same phone number for 20 years.  The biggest problem for most of these situations is legal compliance.  Sometimes people would go to the Emergency Room and follow up with us 3 days later and have to fill out a new form because our physicians work under a different medical group and therefore need a different signature for liability protection.  It is incredible frustrating for patients to have separate billing and separate registration systems for different locations within the same organization.  Luckily, we at least had the information from visits in both places which saves trouble.
     In terms of the need for data in various locations there are less complications but still several.  The biggest problem is the lack of centralized oversight.  It might be that one department is collecting certain types of information for one registry while another is collecting the same information to send off to the DOH and neither has any idea the other one is doing it.  At least with demographic information filling out forms the patient is aware and complaints can be heard and addressed.  When it comes to things like registry data the only way to find out about the overlap is to have the two people abstracting the data to happen to talk to each other which is very unlikely.  These kinds of hidden wastes are rampant in larger systems.  We finally formed a sub-committee to look at registry participation and figure out who is collecting what data and sending it where to cut out a lot of dead weight.