HUS Sample Clauses
HUS. Dataset Name BREX (for BOUNCE) Owner organization Helsinki University Hospital, Comprehensive Cancer Center Dataset description (informal meta- data) Excel file, Patient (n=573) parameters related to breast cancer biology, treatments, symptoms, patients health, lifestyle, occupation, physical condition and quality of life. The data set is retrospective and it was collected before the BOUNCE project as part of the BREX exercise intervention study. Data is essential for the premodelling of resilience. Whole dataset has longterm value since it describes well a large breast cancer population and it is partly unpublished. Formal Meta-data The description of the dataset and files is included to the dataset Standards No standards were used Origin BREX study group File Maker Pro files Language English and Finnish (numbered scales and questionaries are not translated) Size 3,5 MB Variety semi structured Type text Format sav Velocity static, no plans of updating the file Storage BOUNCE data infrastructure Quality Data is precleaned but some additional cleaning mechanisms are needed Example N/A Availability The data is only available to representatives of ICCS, FORTH and SiLo as described in the data sharing agreements Availability after the end of the project The data is only available to representatives of ICCS, FORTH and SiLo as described in the data sharing agreements during the project and one year after it. Sharing mechanisms Files already shared with relevant partners Within the BOUNCE infrastructure, the data are available through the Data Access API. How the data are going to be used during ▇▇▇▇▇▇’s lifetime Data is used according to data sharing agreements by ICCS, FORTH and SiLo. How the data are going to be used after ▇▇▇▇▇▇’s lifetime The data will be available to representatives of FORTH, ICCS and SiLo for one year as described in the data sharing agreements through the BOUNCE data repository available for further exploitation through new models that might be developed by consortium members and according to the exploitation plan developed within the consortium. Related WPs WP 3,4,5 Access rights Data is used according to data sharing agreements by ICCS, FORTH and SiLo. Anonymisation / Pseudonumisation The data is pseudonymized and all the personal identifiers are removed. The identifiers are not available for BOUNCE group they are owned by the BREX study group and coded for paper only (not electronically available). Collection workflow & methodology Dat...
HUS. In HUS routine psychosocial assessments are not routinely conducted. Resilience estimation is based on the oncologist´s or nurse´s clinical experience. If they recognize the need for psychosocial support, the patient is referred to the psychosocial unit consisting of psychiatrists, psychologists, and a nurse trained on basic counselling techniques. Normal patient records are used to report patient´s psychosocial wellbeing, and psychiatrist uses Warwick-Edenburg Mental Well-Being-Scale for some patients. Patient support is based on personal contact and supportive discussions. The number and timing of these sessions varies depending on individual needs. In an acute psychiatric crisis or illness patient is referred to the HUS Psychiatry Department. If patients use Noona they can report all their symptoms (including cognitive and psychological complaints) to Noona. Otherwise the possible information is only in the patients records and not easily available.