The Patient-Generated Subjective Global Assessment (PG-SGA) is an instrument to screen, assess and monitor malnutrition and risk factors, and to triage for interventions. After having translated and culturally adapted the original PG-SGA for the Italian setting, according to International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Principles, we tested linguistic validity, i.e., perceived comprehensibility and difficulty, and content validity (relevance) of the Italian version of the PG-SGA in patients with cancer and a multidisciplinary sample of healthcare professionals (HCPs). Methods: After the translation and cultural adaptation of the original PG-SGA for the Italian setting, the patient component (i.e., PG-SGA Short Form (SF) was tested for linguistic validity (i.e., comprehensibility ad difficulty) in 120 Italian patients with cancer and 81 Italian HCPs. The full PG-SGA, i.e., patient and professional component of the PG-SGA, was tested for content validity, i.e., relevance, in 81 Italian HCPs. The data were collected by a questionnaire and evaluations were operationalized by a 4-point scale. Through item and scale indices we evaluated the comprehensibility (I–CI, S–CI), difficulty (I-DI, S-DI) and content validity (I-CVI, S-CVI). Scale indices 0.80–0.89 were considered acceptable, and scale indices ≥0.90 were considered excellent. Results: Patients perceived comprehensibility and difficulty of the PG-SGA SF (Boxes) as excellent (S–CI = 0.98, S-DI = 0.96). Professionals perceived comprehensibility of the professional component (Worksheets) as excellent (S–CI = 0.92), difficulty as acceptable (S-DI = 0.85), and content validity of the full PG-SGA as excellent (S-CVI = 0.92). Dietitians gave higher scores (indicating better scores) on comprehensibility, difficulty, and content validity of Worksheet 4 (physical exam) than the other professions. In Worksheet 4, four items were considered most difficult to complete and were considered below acceptable range. Relevance was perceived as excellent by professionals for both the patient component (S-CVI = 0.93) and the professional component (S-CVI = 0.90), resulting in S-CVI = 0.92 for the full PG-SGA. Slight textual modifications were implemented resulting in the final version of the Italian PG-SGA. Conclusions: Translation and cultural adaptation of the original PG-SGA resulted in the Italian version of the PG-SGA that maintained its original purpose and meaning and can be completed adequately and easily by patients and professionals. The Italian PG-SGA is considered relevant for screening, assessing and monitoring malnutrition and risk factors, as well as triaging for interventions by Italian HCPs.
Data is widely recognized as a potent catalyst for advancing healthcare effectiveness, increasing worker satisfaction, and mitigating healthcare costs. The ongoing digital transformation within the healthcare sector promises to usher in a new era of flexible patient care, seamless inter-provider communication, and data-informed healthcare practices through the application of data science. However, more often than not data lacks interoperability across different healthcare institutions and are not readily available for analysis. This inability to share data leads to a higher administrative burden for healthcare providers and introduces risks when data is missing or when delays occur. Moreover, medical researchers face similar challenges in accessing medical data due to thedifficulty of extracting data from applications, a lack of standardization, and the required data transformations before it can be used for analysis. To address these complexities, a paradigm shift towards a data-centric application landscape is essential, where data serves as the bedrock of the healthcare infrastructure and is application agnostic. In short, a modern way to think about data in general is to go from an application driven landscape to a data driven landscape, which will allow for better interoperability and innovative healthcare solutions.In the current project the research group Digital Transformation at Hanze University of Applied Sciences works together with industry partners to build an openEHR implementation for a Groningen-based mental healthcare provider.
During the coronavirus pandemic, the use of eHealth tools became increasingly demanded by patients and encouraged by the Dutch government. Yet, HBO health professionals demand clarity on what they can do, must do, and cannot do with the patients’ data when using digital healthcare provision and support. They often perceive the EU GDPR and its national application as obstacles to the use of eHealth due to strict health data processing requirements. They highlight the difficulty of keeping up with the changing rules and understanding how to apply them. Dutch initiatives to clarify the eHealth rules include the 2021 proposal of the wet Elektronische Gegevensuitwisseling in de Zorg and the establishment of eHealth information and communication platforms for healthcare practitioners. The research explores whether these initiatives serve the needs of HBO health professionals. The following questions will be explored: - Do the currently applicable rules and the proposed wet Elektronische Gegevensuitwisseling in de Zorg clarify what HBO health practitioners can do, must do, and cannot do with patients’ data? - Does the proposed wet Elektronische Gegevensuitwisseling in de Zorg provide better clarity on the stakeholders who may access patients’ data? Does it ensure appropriate safeguards against the unauthorized use of such data? - Does the proposed wet Elektronische Gegevensuitwisseling in de Zorg clarify the EU GDPR requirements for HBO health professionals? - Do the eHealth information and communication platforms set up for healthcare professionals provide the information that HBO professionals need on data protection and privacy requirements stemming from the EU GDPR and from national law? How could such platforms be better adjusted to the HBO professionals’ information and communication needs? Methodology: Practice-oriented legal research, semi-structured interviews and focus group discussions will be conducted. Results will be translated to solutions for HBO health professionals.
