Gene/Protein Disease Symptom Drug Enzyme Compound
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Query: UNIPROT:P50502 (Hip)
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Although it has taken the first year to establish a data collection system, it has been a positive learning experience. We learned a coordinator or primary lead person is also essential to ongoing problem solving and to maintain project momentum. We believe it is important to make sure all involved parties understand the study process and purpose and believe in the value of the effort. Feedback to care providers that is timely, accurate, and helpful will be essential for continued cooperation. Response from patients has been cooperative and positive. Only one patient has objected to what was perceived as the personal and immaterial nature of some of the questions; this person viewed the project as a waste of time and money as well as contributing to keeping health care costs unduly high. Several of the patients have called personally to make sure it was understood that although their answers indicated they were having functional or comfort problems, it was not the new hip, but their back or knees that were now the problem. (This appears to be a problem with the measurement tools, particularly the Hip TyPE.) Personal interaction with a number of the more than 100 patients enrolled to date indicates not only acceptance and willingness to participate in the study, but pleasure in seeing that their feelings and experiences are valued. This is more remarkable in that this patient population is older and less accustomed to an active participatory role in their health care. It is suspected that only with more feedback and results of the study will professionals likewise come to recognize and value the patient perspective of outcome as well as the technical success of the procedure. We are getting ready to implement a similar study with patients having total knee replacement. Several lessons that have been learned from the hip study will be put into place. Although the data management system and familiarity with the process will be easier the second time around, it is still important to emphasize the importance of the project to each stake-holder in terms that have meaning for them. The support of the physician group (joint study group) and hospital administration continue to be vital in defining the activity as one of priority in time and resource expenditure. To attach the outcomes study processes to other ongoing activities helps ensure follow through. As Arnold Relman said, "We can no longer provide health care without knowing more about its successes and failures. The Era of Assessment and accountability is dawning..."
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PMID:A pilot site experience: the first year of learning. 881 99