CERVIVA Privacy Statement

CERVIVA (www.cerviva.ie) is a research consortium led by Prof John O’Leary and Prof Cara Martin from the School of Medicine at Trinity College Dublin, with multiple partners in universities, research institutions and hospitals across Ireland and internationally. The CERVIVA Trinity College led Molecular Pathology Research Laboratory is based at the Coombe Women and Infants University Hospital in Cork Street, Dublin 8. We work on a range of research projects in the area of HPV associated diseases and work with different partners across the different project areas.

Access to patient data is vital for the research we conduct within CERVIVA, and we implement high security and governance standards to ensure patient confidentiality within our research studies. CERVIVA obtains appropriate ethical and legal approvals for all research and ensures that it is strictly in the public interest when we use personal information. We do this by following the guidelines set out in the Data Protection Act 2018 (Section 36(2)) (Health Research) Regulations 2018.

This privacy notice applies specifically to personal information held for research purposes for which Trinity College is a Data Controller.

Who are our partners?

All of our CERVIVA research programmes are led by Trinity College Dublin. We work with different project partners across the different studies including CervicalCheck, The National Screening Services, The National Cancer Registry, The Coombe Women and Infants University Hospital, TUDublin. A complete list of the partners working in each project is maintained here. https://www.tcd.ie/medicine/cerviva/collaborators/

Where does our funding come from?

The majority of our funding is currently provided by the Health Research Board, Ireland through a range of different programme and investigator led project grants.

We also get some support from commercial companies to include their technologies in some of our studies. This support is provided in the form of HPV test kits, and technology platforms at reduced costs or free of charge in some cases for the evaluations. These companies currently include Roche Molecular Diagnostics, Hologic, and Becton Dickinson.

Collecting personal information

To safeguard your rights, we will use the minimum personal information necessary. We collect personal information (which includes relevant information about your cervical screening events or your specific cancer and any related treatments) for research purposes from the following sources:

1. Directly from you with your consent

2. From our research partners (e.g. CervicalCheck, The National Screening Services, the National Cancer Registry) with your consent or, under exceptional circumstances (where consent is not possible), with relevant approval from the Health Research Authority to do so.

3. Only pseudonymised (key-coded) information is obtained from third-party sources – this information is linked to you as an individual but this identifiable information is maintained by the third party providing it and will not be shared with the CERVIVA research team, and so will not be used to identify you. For example, if we receive a unique identifier, such as trial ID, we will not make efforts to ascertain your name, address or any other demographic details. We place safeguards in all of our processes to protect your identity.

Using your personal information

All of the personal information we collect is used solely for the purposes of carrying out our research. Personal information collected for research will not be used for any other purpose.

Under the EU General Data Protection Regulation, Trinity College’s legal basis for processing this information is for the performance of a task carried out in the public interest. The CERVIVA team process sensitive health information for the purposes of scientific research with appropriate safeguards in place to protect personal information, as required by the EU General Data Protection Regulation.

If we have asked for your consent to process your personal information, you can find more information about the use of this on the participant information sheet and consent form.

Retention of personal information

We retain personal information in line the consent we have obtained from you and in line with our research retention schedules and regulatory requirements specific to research. We only store and use information that we believe to be factually correct, relevant to our work and not excessive for the purpose it was collected for.

Disclosure of your information to third parties

The information we share with third parties will not be identifiable and is in the form of aggregated study data so cannot be traced back to any individual.

Your rights

You have rights over your personal information by law; these apply to information processed for research purposes, however there are some specific exemptions and your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate.

The CERVIVA team are committed to making every effort to respect your wishes.