It can be difficult to get comprehensive diagnosis and treatment for lupus if free standing hospitals and physicians will not share records and test results with each other. It can also get very expensive when tests must redone for every physician who wants the results. Since lupus is such a complex condition that often responds best to a multidisciplinary team approach. I often find myself using Johns Hopkins (http://www.hopkinsmedicine.org/rheumatology/clinics/lupus_center.html) and the Mayo Clinic (http://www.mayoclinic.org/rheumatology/) as examples of university health systems that use a multidisciplinary team approach to the treatment of lupus. But these cataracts have won the battle and I must give my eyes a rest. Do you live near major health education university that applies a multidisciplinary team approach to treatment of lupus?
Georgia Health Sciences Center
University of Pennsylvania Health System
University of Massachusetts
University of Minnesota
University of Florida
University of Nebraska
The Rockefeller University, NY
The University of Michigan
I find that care in a large institution such as Hopkins to be less than having physician care in private offices. My lab results are copied to all the physicians on my team so tests are not repeated unnecessarily. Now I am in a large metropolitan area (Baltimore where Hopkins is located) and many of my docs have trained at Hopkins or have fellowship training from other large universities but I find relying on a clinic to represent significant delays in treatment at times and less availability to your physician than a private practice.
I did not find them useful- in a crisis situation it was 3 months to get an appointment and the same delays occurred when referred to another MD. In less metropolitan areas the university clinics would be useful as they would have a higher level of expertise. For lab studies etc I personally see that each physician office recieves a copy so everybody is on the same page.
Consistent patient care and sharing of medical information, sorry to say it is patient responsibility. This sharing information amongst doctors (biggest egos in the world) is not a practice they are used to. However, they are learning how to become a community of professional with comprehensive care centers designed for sharing information.
Until everyone is on board, I walk with copies of all blood tests ordered, scans, doctor's notes, patient notes anything they write down, I request a copy and keep it in a binder. It helps when I go to specialists whom don't share information, so they can see what has been done and we can have an advanced discussion about my health.