The DigitalHealthEurope (DHE) project is running a panel discussion within the virtual Health Data Forum Workshop on Wednesday 28th October at 12.30 CEST. The panel session will be on Trust, citizen empowerment and the role of digital literacy on health data sharing. This will draw on the work undertaken in the DHE project on citizen perspectives on using and sharing health data. Dipak Kalra will be one of the panellists.
If you share our vision that we need to enrich knowledge and enhance care through the trustworthy use of high quality health data, you may also be interested in reading Sitra’s latest publication "Towards trustworthy health data ecosystems".
It provides a discussion base for the future strategic use of sensitive data within European health systems. There is food for thought on questions of innovation, the role of professionals and individuals, privacy and transparancy and other data-related challenges.
Dipak Kalra, president of i~HD, is one of the experts who were invited to express their views on the paper. You can read his comments on inclusive decision-making, the key barriers to making the best uses of data, health literacy and more.
H2O is a new five-year project funded through the Innovative Medicines Initiative. Its ambition is to empower patients with digital tools to monitor their outcomes in a standardized manner. Patients can share these data with their physicians and other healthcare providers to facilitate communication in an evidence-based, structured manner. In this way, they will be better able to collaborate with their treating clinicians in making joint healthcare and treatment decisions to obtain the best possible health outcomes.
Additionally, collecting patient-reported outcomes in a standardized way can, when the data are anonymized and aggregated, be used to help health systems learn how to provide the best, most efficient care possible to all patients. Aggregated health outcomes data at a national or European level can be a valuable resource for public health and clinical research.
In order to safeguard patients’ health data, the highest level of integrity and data security will be ensured, by only communicating aggregate data and not patient level data, while at the same time enabling greater transparency of outcomes to allow better decision making for both individual patient treatments as well as health system design.
i~HD is delighted to be a work package co-leader working with colleagues especially on the governance model and sustainability of the planned H2O outcomes observatories, on multistakeholder engagement and consensus building, and on information governance including GDPR compliance.
The H2O consortium brings together patient groups and the best of breed health outcomes generation ecosystem in the form of the European University Hospital Alliance, as well as experts in data standards and quality, psychometric methods, federated networks, governance, business modelling and IMI experience.
i~HD will be present at the 2020 virtual BioData World Congress with no less than 4 presentations in four different tracks, i.e. Data Management and Storage, Big Data & Oncology, Analytics Platform and Rare Diseases. We will be covering some of i~HD’s latest collaborative projects and developments in our key areas of work.
You will find the dates of our presentations below. Be sure to note the dates so that you don’t miss the talks of your interest. Don’t forget to register via the BioData website.
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• How to assess and improve health data quality, so you can trust what you learn - Hannelore Aerts, i~HD Data Quality Programme Manager (data management and storage) 10 Nov, 11:10
• Reusing EHR data across Europe and the US for oncology studies - Dipak Kalra, i~HD President, & Nadir Ammour, Global Lead, Clinical Innovation & Partnership, Sanofi (Big Data & Oncology) 11 Nov, 10:10
• Accountable, transparent, reliable and secure: an assessment framework for safe and trustworthy research platforms - Tom De Vree, i~HD Project Manager & Christophe Maes, i~HD Development Manager (Analytics Platform) 12 Nov, 10:20
• Data protection, GDPR and data sharing: the untold tale of rare diseases patient cohorts and disease registries challenges - Maria Christofidou, Early Stage Researcher & Nathan Lea, leader of i~HD‘s Information Governance & GDPR Task Force (Rare Diseases) 12 Nov, 12:40
BioData World Congress is one of largest events on “Big Data & IA for Life Sciences and Healthcare” in Europe. This year’s edition will be organised in a digital format for health and safety reasons. New platforms and technologies will provide interactive and serendipitous meetings to enable virtual networking. During four days of content, they will be covering all the big topics. They are expecting + 2000 attendees and +300 speakers from more than 750 different organizations including prominent research institutes, universities, most top 30 pharma and biotech companies, IT-companies active in health research and health applications, start-ups, hospitals, national and international health authority agencies, charities active in medical research, press and scientific media outlets etc.
The mission of The European Institute for Innovation through Health Data (i~HD) is to enable, coordinate, and accelerate the efficient development and deployment of interoperable and seamless eHealth solutions and research strategies, towards achieving best practices and sustainable integrated person-centred health care, to optimise health and wellness in Europe, and beyond. It aims to guide and catalyse the best, most efficient and trustworthy uses of health data and interoperability, for optimising health and knowledge discovery.
i~HD has been established to tackle areas of challenge in the successful scaling up of innovations that critically rely on high quality and interoperable health data. It specifically addresses obstacles and opportunities to using health data by collating, developing and promoting best practices in information governance and in semantic interoperability. It is helping to sustain and propagate the results of health information and communication technology (ICT) research that enable better use of health data, assessing and optimising their novel value wherever possible.
i~HD has been formed after wide consultation and engagement of many stakeholders to develop methods, solutions and services that can help to maximise the value obtained by all stakeholders from health data. It supports innovations in health maintenance, health care delivery and in knowledge discovery, while ensuring compliance with all legal prerequisites, especially regarding the insurance of patient’s privacy protection. It unites multiple stakeholder groups to ensure that future solutions serve their collective needs and can be readily adopted affordably and at scale.