Rationale: The APEX system has been promoted to the faculty as providing a new and extremely valuable means of doing clinical research, especially for discovering previously unappreciated clinical associations such as the relationship of kidney stone and myocardial infarction, etc.. Such associations would be very valuable in discovering underlying mechanisms of disease. However, the APEX system falls very short of fulfilling this promise, because it has been primarily designed for maintaining information for medical practice, and for billing. The problem is that it forces the physician to use vague descriptors of disease that are so imprecise as to be of no value whatever in discovery of associations. For example in our Lipid Clinic we have discovered a form of dyslipidemia, cholesterol 7 alpha hydroxylase deficiency, that we believe afflicts about 100,000 Americans. The APEX system refuses to allow us to enter this diagnosis for search purposes, insisting on “cholesterol problem” as a substitute. Because there are probably fifty individual diagnoses that could fall under this heading, all value to translational research is lost.
Also there are data from emerging biomarkers, etc. that it will not accept for search processes. An example is the biomarker, prebeta-1 HDL, also discovered by our group, which is emerging as a robust indicator of risk of myocardial infarction. We have measured this biomarker on nearly four thousand patients. We should be able to enter it with the restriction that it cannot be used for clinical decision making, but allowing faculty to access its value for clinical research.
An academician from the Cleveland Clinic, lecturing here recently, stated they also found APEX nearly useless for research, leading them to re-engineer the IT to overcome these issues, making detailed information searchable. This was done carefully within the envelope of APEX without altering its function for clinical practice, billing, etc.
Plan: We would bring in expert IT personnel to make the changes in APEX, fitting it to our particular needs and system characteristics at UCSF. We would support part-time effort of a clinical faculty member to supervise the entry of appropriate descriptors, following the experience at the Cleveland Clinic.
Criteria and Metric:
We can test the system for association of descriptors in widely diverse information fields.
Expert IT consultation and engineering $40K
Faculty time for descriptors: $ 15K
Collaborators: Faculty from diverse disciplines would be welcomed to bring precision to the descriptors in their respective fields.
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