Towards a European Health Research and Innovation Cloud (HRIC)

The European Union (EU) initiative on the Digital Transformation of Health and Care (Digicare) aims to provide the conditions necessary for building a secure, flexible, and decentralized digital health infrastructure. Creating a European Health Research and Innovation Cloud (HRIC) within this environment should enable data sharing and analysis for health research across the EU, in compliance with data protection legislation while preserving the full trust of the participants. Such a HRIC should learn from and build on existing data infrastructures, integrate best practices, and focus on the concrete needs of the community in terms of technologies, governance, management, regulation, and ethics requirements. Here, we describe the vision and expected benefits of digital data sharing in health research activities and present a roadmap that fosters the opportunities while answering the challenges of implementing a HRIC. For this, we put forward five specific recommendations and action points to ensure that a European HRIC: i) is built on established standards and guidelines, providing cloud technologies through an open and decentralized infrastructure; ii) is developed and certified to the highest standards of interoperability and data security that can be trusted by all stakeholders; iii) is supported by a robust ethical and legal framework that is compliant with the EU General Data Protection Regulation (GDPR); iv) establishes a proper environment for the training of new generations of data and medical scientists; and v) stimulates research and innovation in transnational collaborations through public and private initiatives and partnerships funded by the EU through Horizon 2020 and Horizon Europe

Nutritional and metabolic derangements in Mediterranean cancer patients and survivors: the ECPC 2016 survey

Background: The prevalence of nutritional derangements in patients with cancer is high. This survey assessed patients' awareness of cancer-related nutritional issues and evaluated how important they perceive the impact of nutrition on cancer and treatment to be. Methods: A structured questionnaire was developed to determine: presence of feeding problems, perception of nutrition importance, and perception of physicians' approach to nutrition. The European Cancer Patient Coalition disseminated the questionnaire to its members in 10 countries. The Mediterranean cluster (Italy, Spain, and Greece) was analysed separately to further determine specific patterns in answers. Results: In total, 907 respondents completed the questionnaire (68.8% female participants; 51.7% with cancer; 48.3% cancer survivors; 59.3% diagnosed with cancer ≤3 years ago; 46.2% receiving treatment for <1 year). Feeding problems during illness/therapy were experienced by 72.5% (628/867) of all respondents (Italian: 90.0%, 117/130), although up to 53.9% (467/867) reported that physicians did not check their feeding status. Overall, 69.6% (586/842) of respondents reported weight loss after cancer diagnosis (moderate to severe: 36.7%, 309/842). For Italian respondents, the percentages of overall weight loss and moderate-to-severe weight loss were 85.1% (109/128) and 70.3% (90/128), respectively. Only 35.0% (295/842) of all respondents reported having their weight measured regularly during treatment; 45.7% (385/842) believed their physician considered cancer-related weight loss unimportant. Respondents [all: 56.9% (472/830); Italian: 73.0% (92/126); Spanish: 68.9% (42/61); Greek: 79.7% (47/59)] were unaware of supplements' negative effects during therapy or the need to inform their physician about these supplements [all: 43.6% (362/830); Italian: 55.6% (70/126); Spanish: 47.5% (29/61); Greek: 49.2% (29/59)]. The term ‘cachexia’ was generally unknown to respondents [all: 72.9% (603/827); Italian: 64.3% (81/126); Spanish: 68.9% (42/61); Greek: 47.5% (28/59)] and most respondents [all: 92.4% (764/827); Italian: 91.3% (115/126); Spanish: 91.8% (56/61); Greek: 86.4% (51/59)] received no cachexia-related information. Conclusions: Patients reported differences in perspective between them and physicians on cancer-related nutritional issues and the specific nutritional approaches available for cancer treatment. Increasing physician focus on nutrition during treatment, particularly among Italian physicians, and providing information on optimizing nutrition to patients are essential factors to improving patients' quality of life

Towards a European health research and innovation cloud (HRIC)

The European Union (EU) initiative on the Digital Transformation of Health and Care (Digicare) aims to provide the conditions necessary for building a secure, flexible, and decentralized digital health infrastructure. Creating a European Health Research and Innovation Cloud (HRIC) within this environment should enable data sharing and analysis for health research across the EU, in compliance with data protection legislation while preserving the full trust of the participants. Such a HRIC should learn from and build on existing data infrastructures, integrate best practices, and focus on the concrete needs of the community in terms of technologies, governance, management, regulation, and ethics requirements. Here, we describe the vision and expected benefits of digital data sharing in health research activities and present a roadmap that fosters the opportunities while answering the challenges of implementing a HRIC. For this, we put forward five specific recommendations and action points to ensure that a European HRIC: i) is built on established standards and guidelines, providing cloud technologies through an open and decentralized infrastructure; ii) is developed and certified to the highest standards of interoperability and data security that can be trusted by all stakeholders; iii) is supported by a robust ethical and legal framework that is compliant with the EU General Data Protection Regulation (GDPR); iv) establishes a proper environment for the training of new generations of data and medical scientists; and v) stimulates research and innovation in transnational collaborations through public and private initiatives and partnerships funded by the EU through Horizon 2020 and Horizon Europe