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Patient consent and participation, transparency and ethics

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€150

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What ethical considerations, patient information and consents are needed to participate in data driven research are needed?

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Webinar 3: Patient and participant consent, transparency notices and data subject rights

We explore in this session which data processing activities need formal permission from patients and research data subjects, how consent forms and transparency notices should be worded and how to meet the obligations of data subject rights such as withdrawal. We consider here in more detail the ethical considerations and Independent Review Board requirements in line with consents and participant engagement.

Topics covered include: How to determine and then specify the data collection, storage, analysis and reuse permissions you need to request from participants, and then how to word patient choices, consent forms and transparency notices in ways that assure those permission whilst being understandable and clear. What data subject access rights does GDPR require, and how to comply with the rights including data portability. Handling participant withdrawal: scenarios and obligations, transparency and feedback. How to re-approach patients/users for additional permissions downstream, for example if new data use opportunities arise.

Date: 08/10/2021      Time: 14.00 CEST Duration: 2 hours

Speakers:

  • Nathan Lea
  • Maria Christofidou
  • Julie Power
  • Heidi Mertes
  • Mahsa Shabani

i~HD webinar series 2021: GDPR for tomorrow's health data-driven innovation

It has been over three years since the arrival of the General Data Protection Regulation and the number and scale of health data driven research infrastructures and opportunities across Europe continue to grow. Join i~HD and its experts from across the health research and innovation sector for a series of webinars on how to successfully harness GDPR to meet health data reuse challenges and drive innovation into the next decade.

Our webinar series will offer you an exclusive insight into the GDPR's impact on health data driven research and innovation as experienced by experts from across the health innovation sector. The speakers, working in the legal, ethical, ICT, data management and patient representative professions, will share their knowledge and experience on key aspects of data protection in the field of healthcare innovation. They will discuss and explore practical experience and solutions, best practices and approaches for compliance, data breach management, failures and prosecutions, meaningful public engagement, security, novel technologies and forthcoming regulation (including the AI Regulation and Data Governance Act) and more.

What can you learn from our GDPR Webinar Series? These are the questions we will address:

  • How does GDPR impact on the collection, storage and uses of health data?
  • What are the steps required to develop a GDPR-compliant health data pipeline? 
  • How can you use a Data Protection Impact Assessment to enhance your data handling?
  • What safeguards does the GDPR require when capturing, analysing or sharing data?
  • What are good practices when drafting consent forms, information leaflets and meaningful transparency notices?
  • What codes of conduct should your staff adopt when working with health data?
  • How can you protect against data breaches and their penalties?
  • What are the implications of pseudonymisation and anonymous data use for research and what are the best approaches?
  • How can we develop next generation data analytics complying with the GDPR with a view on the forthcoming AI Regulation and Data Governance Act?

Who should attend?

  • Patient organisations
  • Health care providers
  • Pharma & life sciences
  • Health ICT and data driven industry
  • Health & data strategy organisations
  • Academia & research centres
  • Standards & certification bodies
  • Visit the i~HD website for more information.

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    Organiser i~HD

    Organiser of Patient consent and participation, transparency and ethics

    Health data has the potential to catalyse smarter health care and efficient research . We need to urgently ramp up our learning by creating and combining high-quality health data, and its trustworthy uses. As a neutral, multi-stakeholder institute The European Institute for Innovation through Health Data strives to maximise community value from health data. That is why we promote, develop and share good practices and tools and perform quality assessments.

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