At Saint John of God Community Services clg, we conduct research projects aimed to improve the lives of people affected by mental illness, both as a patient or as a carer or medical staff. The suitability of any project is assessed and validated both by management and by the Research Ethics Committee before the project starts.
SJOGCS operates HSE (Health Service Executive) funded services to children and adults with intellectual disability, and to children, adolescents, and adults with health difficulties. As part of Saint John of God Hospitaller Services Group, it supports approximately 8,000 children and adults annually with over 3,000 staff and volunteers. As well as providing this care, SJOGCS has a long history of conducting research to improve outcomes for patients. Research in mental health and intellectual disability has been well supported by the Order of Saint John of God since 1987 when the first planning and management committee was set up. The data controller for these health research projects is Saint John of God Community Services clg. Granada, Stillorgan, Co. Dublin.
In most instances SJOGCS will rely on Article 6(1) (a) – Consent and Article 9(2) (a) – Consent, or Article 6(1) (f) – Legitimate Interest and Article 9(2) (j) – Scientific Research of the GDPR when we use your information for research. All applications for undertaking health research study must be approved by the Saint John of God Research Ethics Committee. All health research in Ireland is governed by the Health Research Regulations 2018 (HRR) and the amended regulations 2021. The HRR’s make explicit consent the default position for processing personal data for health research. Certain SJOGCS personnel meeting criteria set out in the Amended Health Research Regulations 2021 may access service user health records for pre-screening purposes to determine whether an individual (prospective research participant) is suitable or eligible for inclusion in the study and/or for retrospective chart reviews.
In some instances, depending on the nature of the project, access to personal data may be required. The legal bases for processing your personal data can be found under Article 6 and 9 of the GDPR. Participation in these terms is always voluntary and may be consent based. Should it be required to identify any participants (or their data), you will be contacted with all the relevant information on a research project to allow you to make an informed decision on whether to participate.
Your decision bears no impact on the quality of services you are entitled to and will be provided with by SJOGCS.
It is within our legitimate interests to conduct health care research for the benefit of our patients, for improvement to our service delivery, for the involvement of our patients, and to increase the knowledge base and for the academic education and continuous professional development of healthcare staff and students.
Your data, or the anonymous data derived from it, will not be transferred to a third country or international organisation outside the EU/EEA. Anonymous electronic data used for a study will be retained for 10 years. After 10 years, data will be securely destroyed by the ICT Department of SJOGCS.
You have the right to refuse for your data to be included in a research study. You have the right to access, rectification, erasure, restriction, objection, and data portability for your own personal data under GDPR. Where we have collected your consent for a research project, you have the right to withdraw that consent at any time. You will have received an Information Leaflet when your consent was sought. You can withdraw your consent by contacting the Principal Investigator whose contact details are on the Information Leaflet presented to you.
Withdrawing your consent will bear no impact on the quality of services you are entitled to and will be provided with by SJOGCS. The anonymous data derived from the personal data does not attract the same rights as anonymous data falls outside the GDPR.
As research studies are conducted under the amended Health Research Regulations, your consent may not be sought at all times. Any proposed research will be first reviewed and must be approved by a Research Ethics Committee prior to commencement of a study. The Research Ethics Committee is a body independent from SJOGCS.
11.1. Retrospective Chart Reviews and Pre-Screening
The original purpose for processing your personal data is to deliver a healthcare service to you. Under this notice, the purpose of processing your personal data may be for a retrospective chart review study or pre-screening for selection for inclusion in a research study project. The legal bases for processing your personal data can be found under Article 6 and 9 of the GDPR. The study will be reviewed and approved by a research ethics committee prior to commencement of the study. The legal basis for processing your data for a Retrospective Chart Review research project or pre-screening for selection for inclusion in a research study project is “legitimate interests” Article 6.1. (f) of the GDPR. The condition that your special category personal data (i.e., Health data) is processed for these research activities is under Article 9.2. (j) of the GDPR: “scientific or historical research purposes or statistical purposes in accordance with Article 89”.
For Retrospective Chart Review your personal data may be shared for the purposes of healthcare research to a person who in the course of his or her duties for the controller, would ordinarily have access to the personal data of individuals, health care practitioners, and individuals studying to be a health care practitioner, who are under the control and direction of SJOGCS or an employee of the controller (for example, a medical records clerk). The data which is held by the controller (that were obtained for the provision of health care to those individuals), cannot be disclosed to another person (a third party) by the controller unless such data is anonymised, and any findings from the study that are published must not identify an individual whose personal data was used in the study.
Any proposed research using retrospective chart review will be first reviewed and must be approved by a Research Ethics Committee prior to commencement of a study. The Research Ethics Committee is a body independent from SJOGCS.
11.2. What is a Research Ethics Committee?
A Research Ethics Committee is an independent group of people appointed to formally assess if health research conforms to recognised international ethical standards. It is responsible for protecting the rights of those who take part in the research and the usage of their personal data for health research.
11.3. Your Rights
You may exercise any of your rights by contacting the DPO at Saint John of God Community Services clg, Stillorgan, Co Dublin by e-mail: firstname.lastname@example.org. You may request additional information regarding a research study you are taking part in by contacting the Principal Investigator whose contact details are on the information leaflet.
If you are dissatisfied with the manner in which your personal data is being processed, you may lodge a complaint with the Data Protection Commission. You can do so by clicking here.