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P0583 - My First 1000 Days

My First 1000 Days: A feasibility study of centering-based group care to improve physical, psychological, developmental, and social outcomes of caregivers and infants: Privacy Notice

Principal Investigator: Professor Jason Halford, Faculty of Medicine and Health, School of Psychology, University of Leeds.

What is the My First 1000 Days project?

We are researchers from the University of Leeds and TNO (a research organisation in the Netherlands). We are developing and testing a new group care programme for parents and caregivers. This programme will bring together caregivers to discuss important topics like physical activity, food and nutrition, and child development. Rather than traditional one-to-one care, we will use group sessions that encourage sharing of experiences and building a supportive community. Our goal is to ensure this programme supports all families, including those with caregivers or infants who are disabled/have disabilities.

This study has ethical approval from University of Leeds School of Psychology Research Ethics Committee: PSCETHS-1179.

Why are we doing this research?

We want to find out if this program works well for caregivers and babies and whether it is practical to run. We will look at what worked well and what could be improved.

Your feedback will help shape how we support caregivers and babies in the future.

Privacy Notice

Where do we obtain data from?

Face-to-face, telephone and/or remotely.  This is dependent on the convenience of participants. The delivery of the programme will be conducted face-to-face, the administration of research questionnaires will be conducted either face-to-face or via telephone, and the final one-to-one interview can be conducted either via face-to-face, or by telephone/remotely.  For focus group discussions, these would be conducted face-to-face.

What data do we hold?

Health (height, diet, exercise, pregnancy, pre-and post-birth experience), income, date of birth of their newborn babies, and ethnicity. We will collect primary quantitative and qualitative data from 40 caregivers (programme recipients) and four family wellbeing workers (programme deliverers). 

Will I be recorded, and how will recordings be used?

We will audio record focus groups and interviews to help us remember what you said. These recordings will be used to write reports, research papers, and presentations, but we will never identify you personally.

How will my data be handled?

What data will you collect?

  • Your attendance at sessions
  • Your questionnaire responses
  • Your journal entries (only if you choose to share them)
  • Your thoughts and experiences from a focus group and/or interview

How will my data be stored and protected?

  • Attendance records: Stored in a locked cabinet at the University of Leeds.
  • Questionnaires: Questionnaire answers will be anonymised and entered in a spreadsheet, and stored on a secure, password-protected University of Leeds research IT storage system. Paper copies will be destroyed securely.
  • Journals (if you choose to share them): Scanned and anonymised, then stored on a secure, password-protected University of Leeds research IT storage system. Your original journal will be returned to you.
  • Focus group and interview recordings: Audio recordings will be written up and anonymised. You will be provided with a participant ID number so that your identity is protected. The original recordings will be deleted once they have been written up. The transcripts will be stored securely on a secure, password-protected University of Leeds research IT storage system.

Who will have access to my data?

Only the research team and those typing up the recordings will have access to them. The audio recordings will not be shared outside the research team.

We may use direct quotes from focus groups, interviews, or aspects of journals in reports, research papers, and presentations. However, we will never include your name or anything that could identify you. Findings may also be published on the My First 1000 Days website.

What are my data rights?

Under UK GDPR, you have rights over your personal data, including:

  • Access – You can ask to see the data we hold about you.
  • Correction – You can request updates if your data is incorrect.
  • Erasure – You can ask us to delete your data.
  • Restriction – You can limit how we use your data.
  • Portability – You can request a copy of your data in a usable format.
  • Objection – You can ask us to stop using your data.

These rights may be limited in some situations, especially when data is used for research. For example, we may not be able to remove anonymised quotations from you from any reports we write up about the project, after those reports have been published. However, we are always happy to discuss any concerns. If you’d like to exercise any of these rights, please get in touch using the contact details below.

What is the purpose and legal basis of the processing?

Under the General Data Protection Regulation (GDPR), the University of Leeds must identify a legal basis for processing personal data and, where appropriate, an additional legal basis for processing special category data.

As a publicly funded organisation, the University of Leeds processes personal data to undertake scientific research which is in the public interest (further details here: https://dataprotection.leeds.ac.uk/wp-content/uploads/sites/48/2019/02/Research-Privacy-Notice.pdf). The legal basis for processing data is under Article 6 (1) (e) of the GDPR: Processing is necessary for the performance of a task carried out in the public interest. Special category data is processed under Article 9 (2) (j): Processing is necessary for archiving purposes in the public interest, or scientific and historical research purposes or statistical purposes.

How will you keep my data secure?

The data controllers for this study are the University of Leeds.

The University has in place appropriate technical and organisational measures to protect your personal data and/or special category data.

Information will be treated confidentially. The University is committed to the principle of data protection by design and default and uses the minimum amount of data necessary for the project.

How can I access my personal information?

Various rights under data protection legislation, including the right to access personal information that is held about you, are qualified or do not apply when personal information is processed solely in a research or archival contact. This is because fulfilling them might adversely affect the integrity of, and the public benefits arising from, the research study or project.

The full list of (qualified or inapplicable) rights is: the right to access the personal information that is held about you by the University, the right to ask us to correct any inaccurate personal information we hold about you, to delete personal information, or otherwise restrict our processing, or to object to processing (including the receipt of direct marketing) or to receive an electronic copy of the personal information you provided to us.

If you have any questions regarding your rights in this context, please use the contact details below. Please note as we do not hold names or addresses for this study, we cannot remove participants from this study, correct any information we hold about you or provide you with an electronic copy of the personal information we hold about you.

How long is my information kept?

For 10 years. De-identified data will be stored on a secure, University-provisioned research data storage ‘LASER’ for Tier 3 data. Only the core study team, which includes the PI, four researchers and four family wellbeing workers will be able to re-identify them only if they have access to the participant ID numbers. A list of participant ID numbers will be kept in a separate location, away from this set of de-identified data.

Who can I contact?

If you have any questions about this research study, please contact the principal investigator Professor Jason Halford via [email protected].

If you have any general questions about how your personal information is used by the University, or wish to exercise any of your rights, please consult the University’s data protection webpages. If you need further assistance, please contact the University’s Data Protection Officer [email protected]

Our general postal address is University of Leeds, Leeds LS2 9JT, UK.

Our data controller registration number provided by the Information Commissioner’s Office is Z553814X.

How can I complain?

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Who is funding this research?

This study is funded by a generous donation from two University of Leeds alumni. You can read more here: https://myfirst1000days.co.uk/project-partners-and-funding/.

The funders are not involved in the study.