Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the Toronto Staging Guidelines (TG) by Population-Based Cancer Registries (PBCRs) to the most common solid paediatric cancers.MethodsPBCRs within and outside Europe were invited to participate and identify all cases of Neuroblastoma, Wilms Tumour, Medulloblastoma, Ewing Sarcoma, Rhabdomyosarcoma and Osteosarcoma diagnosed in a consecutive three-year period (2014-2017) and apply TG at diagnosis. Other non-stage prognostic factors, treatment, progression/recurrence, and cause of death information were collected as optional variables. A minimum of three-year follow-up was required. To standardise TG application by PBCRs, on-line workshops led by six tumour-specific clinical experts were held. To understand the role of data availability and quality, a survey focused on data collection/sharing processes and a quality assurance exercise were generated. To support data harmonization and query resolution a dedicated email and a question-and-answers bank were created.Results67 PBCRs from 28 countries participated and provided a maximally de-personalized, patient-level dataset. For 26 PBCRs, data format and ethical approval obtained by the two sponsoring institutions (UCL and INT) was sufficient for data sharing. 41 participating PBCRs required a Data Transfer Agreement (DTA) to comply with data protection regulations. Due to heterogeneity found in legal aspects, 18 months were spent on finalizing the DTA. The data collection survey was answered by 68 respondents from 63 PBCRs; 44% of them confirmed the ability to re-consult a clinician in cases where stage ascertainment was difficult/uncertain. Of the total participating PBCRs, 75% completed the staging quality assurance exercise, with a median correct answer proportion of 92% [range: 70% (rhabdomyosarcoma) to 100% (Wilms tumour)].ConclusionDifferences in interpretation and processes required to harmonize general data protection regulations across countries were encountered causing delays in data transfer. Despite challenges, the BENCHISTA Project has established a large collaboration between PBCRs and clinicians to collect detailed and standardised TG at a population-level enhancing the understanding of the reasons for variation in overall survival rates for CC, stimulate research and improve national/regional child health plans

Creating a desired future for pharmacy education and professional practice in Argentina: Summary of a planning workshop

The need to know the current state of professional practice in Argentina in different areas, and the absence of systematicinformation about it, led to the organisation of a workshop with pharmacists from several different practice settings. Theworkshop provided a space for reflection and dialogue for the participants committed to improving pharmacy educationand professional practice in Argentina. The objective of this report was to document the main points from this workshop; which allowed the participants toreinforce their identity as pharmacists, review health policies in Argentina and identify the strengths and weaknesses ofpharmacy education and professional practice in order to work on the gaps observed. A list of future actions to be implemented in the work setting was drawn up and the representatives who would allowthe implementation of necessary action plans and who expressed their commitment to act upon them were identified.This experience highlighted the need to strengthen the professional role of the pharmacist and demonstrated that thistype of activity could contribute to pharmacy education and professional practice, and would allow the gathering ofuseful information for future guidelines to bring about the necessary changes for improvement of patient care.This report aims to share the results of the activities performed that reflected the present situation and the need forchange. By transmitting their experience, the authors will allow others to replicate and adapt it to different contexts.This report contributes to the global knowledge regarding issues that impact pharmacy practice from the Argentinianperspective.Fil: Olivera, Maria Eugenia. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Córdoba. Unidad de Investigación y Desarrollo en Tecnología Farmacéutica. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Unidad de Investigación y Desarrollo en Tecnología Farmacéutica; ArgentinaFil: Manasse, Henri. University Of Illinois/college Of Pharmacy; Estados UnidosFil: Alarcon Ramirez, Liliana Paola. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Córdoba; ArgentinaFil: García, Mónica Cristina. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Córdoba; Argentina. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; ArgentinaFil: Guzmán, Maria Laura. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Córdoba; ArgentinaFil: Luciani Giacobbe, Laura Carolina. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Córdoba; Argentina. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; ArgentinaFil: Maggia, Norma Graciela. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Córdoba; ArgentinaFil: Palena, María Celeste. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Córdoba; ArgentinaFil: Uema, Sonia Andrea Naeko. Universidad Nacional de Córdoba. Facultad de Ciencias Químicas. Departamento de Farmacia; Argentin

Creating a Desired Future for Pharmacy Education and Professional Practice in Argentina: Summary of a Planning Workshop

The need to know the current state of professional practice in Argentina in different areas, and the absence of systematic information about it, led to the organization of a workshop with pharmacists from several different practice settings. The workshop provided a space for reflection and dialogue for the participants committed to improving pharmacy education and professional practice in Argentina. The objective of this report is to document the main points from this workshop; which allowed the participants to reinforce their identity as pharmacists, review health policies in Argentina and identify the strengths and weaknesses of pharmacy education and professional practice in order to work on the gaps observed. A list of future actions to be implemented in the work setting was drawn up and the representatives who would allow the implementation of necessary action plans and who expressed their commitment to act upon them were identified. This experience highlighted the need to strengthen the professional role of the pharmacist and demonstrated that this type of activity could contribute to pharmacy education and professional practice, and would allow the gathering of useful information for future guidelines to bring about the necessary changes for improvement of patient care. This report aims to share the results of the activities performed that reflected the present situation and the need for change. By transmitting our experience, we will allow others to replicate and adapt it to different contexts. This report contributes to the global knowledge regarding issues that impact the pharmacy practice from the Argentinian perspective