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The artworks of the Peruvian artist Carlos Runcie Tanaka, who has his British and Japanese Roots combined in his surname, refer to pre-Columbian ceramics and traditional Peruvian, Japanese and European practices. He represented Peru in ARCOmadrid 2019, the 12th Havana Biennial, the XXVI Sao Paulo Biennial, the 49th Venice Biennale, and the I Bienal Iberoamericana de Lima. In August, we sat down to talk about music, the past, the present, and the future. We discussed how all references of time can be combined into one material.
By studying pre-Columbian ceramics, researchers have developed several interpretations about the lifestyle and cosmovision of the ancient Peruvian people. Many of the techniques and motifs included in these traditional practices are still being passed on to communities throughout the country today. This ancestral knowledge is a fundamental element of identity. Therefore, ceramic is a material that has made the generation of historical discourse and the preservation of cultural memory possible. At the same time, ceramics are connected to aspects of our daily life. As objects of daily use (such as mugs, plates and bowls) they contribute to the fulfillment of basic needs. They are also included in ritual and funerary practices. In conclusion, the use of ceramics can be understood not only in a practical sense, but in an artistic sense as well.
Background: Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs based on distributed clinical data from ten university hospitals. This qualitative study aims to investigate (1) the relevant organizational conditions for the operation of a CDSS for RDs when diagnose patients (e.g. the diagnosis workflow), (2) which data is necessary for decision support, and (3) the appropriate user group for such a CDSS.
Methods: Interviews were carried out with RDs experts. Participants were recruited from staff physicians at the Rare Disease Centers (RDCs) at the MIRACUM locations, which offer diagnosis and treatment of RDs.
An interview guide was developed with a category-guided deductive approach. The interviews were recorded on an audio device and then transcribed into written form. We continued data collection until all interviews were completed. Afterwards, data analysis was performed using Mayring’s qualitative content analysis approach.
Results: A total of seven experts were included in the study. The results show that medical center guides and physicians from RDC B-centers (with a focus on different RDs) are involved in the diagnostic process. Furthermore, interdisciplinary case discussions between physicians are conducted.
The experts explained that RDs exist which cannot be fully differentiated, but rather described only by their overall symptoms or findings: diagnosis is dependent on the disease or disease group. At the end of the diagnostic process, most centers prepare a summary of the patient case. Furthermore, the experts considered both physicians and experts from the B-centers to be potential users of a CDSS. The experts also have different experiences with CDSS for RDs.
Conclusions: This qualitative study is a first step towards establishing the requirements for the development of a CDSS for RDs. Further research is necessary to create solutions by also including the experts on RDs.