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 information.
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 turned seven. It looked only at routinely collected health and education data—this is information that the GP, hospital and school collect when looking after people.
The study looked 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.
Study of FNP mechanisms
We are now doing some more work looking at how the benefits families received from taking part in the programme were achieved. We will do this by looking at different FNP processes and mechanisms then lead to change.
You won’t need to do anything for this mechanism study. We will not be asking you to complete any questionnaires or to take part in any interviews.
For our previous Building Blocks: 2-6 study, Cardiff University provided 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 supplied only included your/your child’s name, NHS Number, date of birth, postcode and gender.
NHS Digital provided information on how project participants had 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.
The DoE provided information on how participants had used education services including details of school attendance, free school meals, special education needs and school achievements.
The Department of Health provided information that helped identify pregnancies mothers had since the birth of their Building Blocks baby. This included any pregnancies that ended in abortion. As with all other study data, the identity of the mothers will not be known to the researchers.
Those departments provided data to the Secure Anonymised Information Linkage (SAIL) databank based at Swansea University. No identifiable data were sent. Instead, a study number was assigned to each individual and was used to join pieces of information together. Data viewed by the research team are not identifiable.
In other words, when we look at your health and education information, all we see is a database containing numbers. When a database technician was sent more data from the sources we mentioned earlier, they used the study number to identify a person and join up the information.
We do not know who is who in the database - See the image below for an example of what we see:
In the new work we are doing about FNP mechanisms, more researchers will also look at the same information. These researchers are based in London and work closely with the study team in Cardiff. Like the Cardiff team, they will not know who is who in the database.
Privacy Information FNP mechanisms study
The Data Controllers for this study on FNP mechanisms are Cardiff University and the University College, London (UCL). To contact the Cardiff University Data Protection Officer please click on this link. To contact the UCL Data Protection Officer please click on this link.
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 (or via UCL please follow this link).
To note, rights in relation to automated decision making and profiling are not relevant in this study (i.e. we do not use automated decision making)
Privacy Information Building Blocks: 2-6
The Data Controller and Sponsor for this study is Cardiff University. To contact the University Data Protection Officer please click on this link.
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. To note. Rights in relation to automated decision making and profiling are not relevant in this study (i.e. we do not use automated decision making).
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 and within 15 years of the study ending.
If you wish to raise a complaint on how we have handled your personal data, you can contact Cardiff University’s Data Protection Officer, firstname.lastname@example.org, who will investigate the matter (alternatively you can contact the UCL Data Protection Officer - email@example.com). 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) by visiting https://ico.org.uk/make-a-complaint/ or by calling their helpline on 0303 1231113.