About this Event
On November 4th, the HRDPN conference entitled "Creating a Brighter Future for Data Protection in Clinical Research in Ireland" will be held at RCSI, 123 St Stephen's Green.
The conference aim is to create an effective and streamlined ecosystem to deliver data protection while enabling health research in Ireland (stakeholders perspectives, actions required, possible solutions and next steps).
The HRDPN (Health Research Data Protection Network) was established in 2018 and is a network of professionals from the academic and health sectors seeking to achieve consistency in data protection approaches across the Irish health research sector.
There are several barriers which deter health researchers and sponsors of clinical trials from conducting health research in Ireland including; complex regulatory requirements, inconsistent interpretation of GDPR and approval setup for studies, which can be time consuming and onerous. This event will consider the current landscape for clinical research in Ireland and will collate the inputs of stakeholder to seek to make constructive recommendations.
The conference will gather stakeholder perspectives ranging from public patient perspective, researchers, clinicians, industry, and regulators.
Outputs: Report , including an action plan.
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Please note: In the afternoon we ask that all delegates split into breakout groups to propose solutions to one of the 8 issues below: On the registration page you will be asked to select which of the eight topics is of most interest to you.
1. System unpredictability / inefficiencies, which, in comparison with other countries, deters Sponsors to conduct clinical trials in Ireland. The System unpredictability / inefficiencies are associated with the challenges below.
2. Consent: onerous requirements, which do not necessarily reflects data subjects’ point of view, barrier to research relying on retrospective data, age of consent (clinical trial versus biomedical research versus digital consent)
3. GDPR/HRR: Inconsistency (among organisations) of (a) interpretation of the regulations and (b) institutional requirement. The regulations are too complex and therefore poorly understood by researchers
4. DPIA: Lack of clarity on requirements/process (duplication, inefficiencies), too complex for researchers
5. Institutional approval processes for study set up (ethics, DP and legal): onerous and time consuming approval processes (duplications, inefficiencies, lack of coordination between functions). Added complexity and inefficiencies for collaborative projects, which require multiple approvals
6. Ethics: undefined role of ethics committees’ role in DP review, which can lead to the duplication of the DPO’s review
7. Data protection contracts (legal aspects and workload): inconsistently of approaches, high volume, slow turnaround, researchers deterred by contract delays to engage with contract/legal teams
8. Human resources: Lack of resources to deliver DPO and contract/legal roles.
Privacy Notice
The personal data you provide to the HRDPN via the Eventbrite link when registering for the conference will be processed by the conference organisation committee for the purpose of managing your registration. The lawful basis for processing is your consent. Information will not be shared outside the network or for purposes other than the direct purpose of managing the conference.
The HRDPN will not transfer information provided by registrants to locations outside the EEA. How Eventbrite, as provider of the sign up platform, processing registrants’ data is available here.
Personal data provided by registrants will not be kept beyond the duration required for management and post-event administration of the conference.
Content of presentations, discussions, or individual inputs contributed by conference speakers and participants, will inform the overall content of the report which will form the output of the conference.
Under data protection legislation registrants have the following rights:
• Right to be informed
• Right to access and get a copy of their personal data
• Right to have their personal data corrected (rectification)
• Right to have their personal data deleted
• Right to limit or restrict the use of their personal data
• Right to data portability
• Right to object
Registrants who wish to receive a pdf copy of the report that will be the conference output, or want to exercise their rights should notify [email protected] of their request.
Data subjects have the right to contact the DPC, if they feel their data subject rights have not been respected.
This conference will be recorded for the purposes of writing the report and this recording will be deleted when the conferenece report is complete.
Event Venue & Nearby Stays
Royal College of Surgeons in Ireland (RCSI), 123 Saint Stephen's Green, Dublin 2, Ireland
EUR 0.00 to EUR 161.86