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Data Statement for IDS-TILDA

IDS-TILDA is hosted by the Trinity Centre for Ageing and Intellectual Disability (TCAID). The aim of TCAID is to address the inequalities and health disparities that occur for people with intellectual disability as they age.
We do this by conducing rigorous engaged research on the physical and social determinants of health and wellbeing and translation of findings to inform models of policy and practice. To do this work, we gather, store and use ‘personal data’ such as names, email addresses, photographs and telephone numbers.

All data are important to us and we always aim to treat them in a clear, secure manner as a way of respecting the people who gave us the data about themselves.

IDS-TILDA Data
While we already provide information in our cover letter, our information leaflets and on our consent forms, we want to ensure that we can keep everyone informed on all aspects of how we work. In December 2018, the Department of Health issued a document called ‘Guidance on Information Principles for informed consent for the processing of personal data for health research’. Prompted by this guidance, we are happy to share the following information:

1. General

Title and Purpose of the Research
IDS-TILDA is the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing.
It is a longitudinal study researching ageing in Ireland among people with an intellectual disability aged 40 and over. The aim of the study is to identify the principal influences on successful ageing in persons with an intellectual disability, and then determine if they are the same or different from the influences for the general population.


Personal Data Collected and Used
Name; address; phone number; age; date of birth; living arrangements; friendship and family; quality of relationships; social activities; physical, mental and cognitive health; health care utilisation; medication, occupation and functional limitations. In addition, personal physical health measures and biological samples will be collected to include -
Activity patterns; Blood drop sample; Blood pressure; Bone density; Breath; Calf circumference; Cognitive functioning; Foot health; Grip strength; Hair sample; Height; Mobility and falls risk; Nutritional health; Oral health; Waist and hip measurement; Weight.


Using Pseudonymised Data
IDS-TILDA removes information like name, address, contact details, etc. from the collected data. This information is kept apart from the other data so that the person cannot be identified. This process is called pseudonymisation. Pseudonymised data is used in IDS-TILDA because the researchers need to go back to the same people during the next wave of data collection and must have a way of keeping in touch with them.


Benefits of IDS-TILDA
The purpose of IDS-TILDA is to understand the ageing process for people with an intellectual disability, what health conditions they have and how this relates to the wider determinants of health and wellbeing such as social contact, living arrangements, etc. This research endeavours to inform policy and practice in the area of intellectual disability so that both the State and services can be better equipped to support healthy ageing among this population.


Finding Out about Health
Anyone who takes part in the IDS-TILDA Health Fair is provided with a report card on data gathered. This information may lead them to take action about any of these results. People also have a choice about whether they give samples of blood, hair or breath. If they agree, they can request the results. If, after analysis, the sample shows something unexpected, the person will be informed. 


Giving Consent
IDS-TILDA seeks consent on an ongoing basis throughout the data gathering process – we call this ‘process consent’. We check that consent is given freely and voluntarily. If someone decides not to consent, it will have no adverse consequences. People can also withdraw their consent by contacting the Project Manager, Margaret Haigh at the contact details below – by letter, by email or by phone. Personal information will be deleted from the dataset, apart from any data that has already been analysed or in the process of being published.


Complaints
If someone involved in IDS-TILDA would like to make a complaint, they can do so by contacting the Project Manager, Margaret Haigh at the contact details below – by letter, by email or by phone.

2. Details on who is conducting the research

Data Controller
The data controller for this research is Trinity College Dublin and the Data Protection Officer:
Data Protection Officer
Secretary’s Office, Trinity College Dublin
Dublin 2, Ireland.

Principal Investigators
IDS-TILDA has two Principal Investigators for the study. Prof Mary McCarron is Professor of Ageing & Intellectual Disability in the School of Nursing and Midwifery and is the Director of the Trinity Centre for Ageing and Intellectual Disability. Prof Philip McCallion is Director of the School of Social Work in Temple University, Philadelphia. He is a visiting Professor at Trinity College Dublin.

Prof Mary McCarron
Trinity Centre for Ageing and Intellectual Disability
2 Clare Street
Dublin 2
D02 CK80
Tel: + 353 1 896 3186

Prof Philip McCallion
c/o Office of Admissions
College of Public Health
1101 W. Montgomery Avenue
Suite 370
Philadelphia
PA 19122
Tel: + 215 204 5806

Data Processors
A data processor is used to hold and process data which has been gathered by researchers in the field. One of the data processors is engaged to design the CAPI (Computer Assisted Personal Interviewing) data collection tool which will be used in face-to-face interviews. It holds the data securely until such time as it is transferred to the appropriate secure servers within Trinity College Dublin.
This data processor for Wave 4 is Behaviour & Attitudes, Milltown House, Mount St Annes, Milltown, Dublin 6, D06 Y822. This company acted as data processor in Wave 3 of the study and has the skills and expertise needed to fulfil this role. Behaviour & Attitudes subcontract work to two data management companies: IT Force, 27 Fitzwilliam Street Upper, Dublin 2, D02 TP23; and Kefron, 53 Park W Rd, Cherry Orchard, Dublin, D12 F8RK.
A number of other data processors are used in order to hold and process data which has been collected during the Health Fair. This is due to the fact that the study itself does not have the capacity to analyse the samples provided.
The data processors for Health Fair data in Wave 4 are: for blood samples, MedLab Pathology, Unit 3, Sandyford Business Centre, Sandyford Business Park, Dublin 18; for breath samples, Biochemistry Department, Laboratory Medicine Directorate, St. James's Hospital, James's Street, Dublin 8; for dietary information Open Lab, Floor 1, Urban Sciences Building, 1 Science Square, Science Central, Newcastle Upon Tyne, NE4 5TG, United Kingdom; for hair follicle samples, Dresden LabService GmbH, Tatzberg 47-49, D-01307 Dresden, Germany.
Physical activity / sedentary behaviour information will also be gathered using devices and software created by PAL Technologies Ltd (50 Richmond Street, Glasgow G1 1XP, Scotland, UK) but they will not have any access to the data gathered using their devices or software.
In addition, interviews carried out as part of the End-of-Life part of IDS-TILDA research will be transcribed by Audiotrans, 25 Pinelawn, Oldbawn, Tallaght, Co. Dublin, D24 KX4P, a company specialising in transcription of research material.
IDS-TILDA also uses couriers to ensure that secure information is delivered straight to the IDS-TILDA offices. For international packages, IDS-TILDA will use FDS Worldwide and for Ireland-wide deliveries, IDS-TILDA will use Cyclone.


Confidentiality
All researchers involved in the gathering or analysis of IDS-TILDA are bound by the rules and regulations that protect the identity of anyone involved in the research.


Funding
IDS-TILDA is funded by the Health Research Board and the Department of Health. These funders do not have access to any of the data provided for the study.


Data Protection Training
All staff in the Trinity Centre for Ageing and Intellectual Disability and researchers using IDS-TILDA data must complete the online module on GDPR provided by Trinity College Dublin. All field workers are also provided with a half-day workshop on the influence of GDPR and research integrity on IDS-TILDA as part of their comprehensive training to participate in IDS-TILDA.

3. Obtaining, use, storage and disclosure of personal data

Data from Healthcare Providers
Principal data will be collected, with consent, from those involved in the study, i.e. people with an intellectual disability, their family members or carers. In certain cases, key workers employed by disability support services may support the person to participate in IDS-TILDA.


Processing Promise
Personal data will be processed only as is necessary to achieve the objectives of IDS-TILDA and will not be processed in a way that damage or distress will be caused to the data subject.


Duration of Data Retention
As this is a longitudinal study, all data will be retained for the duration of the study plus a further five years, in a pseudonymised format. By its nature, this study compares data over different waves of the study and the data from early waves must remain available to researchers in order to compare with data from later waves.


At the End of the Study

While IDS-TILDA is in progress, the data will remain psudonomysed and available to TCAID / IDS-TILDA researchers for analysis. Any personal contact information will be available to core IDS-TILDA staff only for the purposes of the logistics of the study. On completion of the study, the data will be fully anonymised and a review will take place of what data could be archived in a public repository which would not identify any living participants of the study.


Disclosure of Data
Any relevant contact data is disclosed to a data processor (currently Behaviour & Attitudes) for supply to an IDS-TILDA field researcher in order to identify interviewees for the study. All data collected by the IDS-TILDA field researchers is also handled by that data processor for the sole purpose of supply to IDS-TILDA.
Once the data is gathered, it is no longer retained by the data processor or any field researcher. The data is then only disclosed to researchers working with the IDS-TILDA team and is not disclosed to anyone external to that group.
For the health fair information, pseudonymised samples are created. These are then supplied to data processors for analysis, without any other personal data. Once analysis by the processor is complete, samples are destroyed and results are returned to IDS-TILDA. In any case where a data processor wishes to retain data, it will be done with the explicit consent of the person who supplied the sample.


Non-Commercial Purposes
No data will be used or disclosed for commercial purposes. In the event of any commercial use being proposed, re-consent would be sought.


Data Security
All paper copies of data are held in locked filing cabinets in secure, alarmed offices in the Trinity Centre for Ageing and Intellectual Disability.
All electronic copies of data are held in secure folders on the TCAID server only accessible by a small number of TCAID staff.


Risk Assessment
A Data Protection Impact Assessment, which identifies whether there are any risks involved in research such as IDS-TILDA, is being carried out.


Data Leaving the State
None of the data from the main study is intended to leave the State. Data gathered from the Health Fair will be sent to data processors in the UK and in Germany for analysis. This data will be pseudonymised prior to sending.

4. Research Ethics Committee

Ethical Approval was granted in December 2018 by:
Health Sciences Ethics Committee
Health Sciences' Faculty Office
Ground Floor, Chemistry Building
Trinity College Dublin, Dublin 2


Email ethicscommittee@tcd.ie


The Principal Investigator was the Dean of the Faculty of Health Sciences at the time of the application. All TCAID staff who work on IDS-TILDA are employees of Trinity College Dublin.
All approved research requires six-monthly Monitoring reports and an End of Project report.


No conditions were attached to the research by the Research Ethics Committee

5. Lawful basis for the research

Under Article 6 and Article 9 of the General Data Protection Regulation, the legal basis for the processing of data is that the person has given their explicit consent for the use of their data in pursuit of the aim of IDS-TILDA.

6. Follow-up contact

As this is a longitudinal study, all participants will be followed up during future waves of the research. IDS-TILDA also has a ‘keep in touch’ strategy where it distributes a newsletter to participants and greeting cards at Easter and Christmas.

7. Project Manager

For further information about these or any other aspect of the IDS-TILDA study, please contact:
Margaret Haigh
Project Manager
IDS-TILDA
Trinity Centre for Ageing and Intellectual Disability
2 Clare Street
Dublin 2 D02 CK80
Tel: +353 1 896 3187