Our current data protection laws were created when the internet was in its infancy, before the advent of social media and when nobody had heard the term ‘big data’. The General Data Protection Regulation (GDPR) will modernise and overhaul the legal framework for privacy and the protection of personal data across the EU. An issue of great importance also for patient and patient organisations data.
Presentation at the WECAN Academy 2019:
GDPR and data protection, how this applies to trials, registries, big data and patient organisations data
Presenter: Julius Zaleskis, Dataprotection LT
The following presentation held at the WECAN Academy 2019 will help you to understand:
- Key elements of GDPR – what is the new regulation, what is different than before
- How GDPR applies to cancer research, clinical trials, registries, big data and patient orgs data
- What this means to cancer research, e.g. existing registries, existing clinical data, ongoing data
- Whether this stops patient organisations doing things we need to do as patient advocates?
- How to deal with existing data we have, e.g. distribution lists to patients affected by a disease that patient organisations have built over years and are an important asset for their advocacy work – as we see different approaches that some providers are asking to “re-consent” for newsletters actively, while others just inform about new data protection rules
- What to do with existing websites and Facebook groups and online forums – and the data protection rules of patient organisations, online patient communities etc, knowing that patient organisations do not have legal departments or budgets for legal offices