This website is for participants of the Building Blocks research project.
We sent an email, text or letter to all mums in Building Blocks in October 2014 or September 2016.
We will continue to keep this website up to date with information about the study. Please read the following pages.
If you are happy with all the information you have received, and have no further questions, you do not need to do anything.
The First Project - Building Blocks
A programme of home visits by specially trained nurses (called the Family Nurse Partnership or FNP) aims to support young mums expecting their first child.
The programme was compared to usual health and social care in a study involving 18 English centres and followed children until they were two years old.
The Second Project - Building Blocks: 2-6
This research project will follow up these same individuals until that child turns six. However, it will look only at routinely collected health and education data—this is information that the GP, hospital and school collect when looking after people.
The study will look at this information to explore the long term effects of extra home visits from family nurses versus the services currently available to families in England.
You won’t need to do anything for this follow-on study. We will not be asking you to complete any questionnaires or to take part in any interviews.
Cardiff University provide details to identify you/your child to the NHS Digital, the Department of Health and the Department of Education (DoE) in order for those professionals to provide relevant information about you and your child. The details we will supply will only include your/your child’s name, NHS Number, date of birth, postcode and gender.
NHS Digital will provide information on how project participants have used different health services (e.g. how many hospital visits) and for what reasons and also, if applicable, information from the Office for National Statistics data.
The DoE will provide information on how participants have used education services including details of school attendance, free school meals, special education needs and school achievements.
The Department of Health will provide information that will help identify pregnancies mothers have had since the birth of their Building Blocks baby. This will include any pregnancies that ended in abortion. As with all other study data, the identity of the mothers will not be known to the researchers.
We may also look at social care data if information about child health and education is not available from the Department of Health and Department for Education.
Those departments will provide data to the Secure Anonymised Information Linkage (SAIL) databank based at Swansea University. No identifiable data will be sent. Instead, a study number will be assigned to each individual and this will be used to join pieces of information together. Data viewed by the research team will not be identifiable.
In other words, when we look at your health and education information, all we will see is a database containing numbers. When a database technician is sent more data from the sources we mentioned earlier, they will use the study number to identify a person and join up the information.
We will not know who is who in the database - See the image below for an example of what we will see:
The Data Controller and Sponsor for this study is Cardiff University.
To find out your rights (including contact details for any queries you have) under the General Data Protection Regulation and UK Data Protection Laws please follow this link.
The legal basis for processing identifiable data for research purposes under GDPR is task in the public interest and for processing special categories this is necessary for archiving purposes in the public interest and scientific purposes. For information on what this means please follow this link.
Identifiable data (personal data) collected as part of the original trial and used to contact you is stored separately to the data used for analysis and will be destroyed when it is no longer necessary to keep this information.