NHS Digital Data Release Register - reformatted

Ipsos projects

OHID/Ipsos Infant Feeding Survey 2023/2024
CQC Adult Inpatient Survey Bespoke HES Extraction

32 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

🚩 Ipsos was sent multiple files from the same dataset, in the same month, both with optouts respected and with optouts ignored. Ipsos may not have compared the two files, but the identifiers are consistent between datasets, and outside of a good TRE NHS Digital can not know what recipients actually do.

OHID/Ipsos Infant Feeding Survey 2023/2024 — DARS-NIC-663093-K1B0K

Type of data: information not disclosed for TRE projects

Opt outs honoured: Identifiable, No, Yes (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: Yes (Consultancy)

Sensitive: Sensitive, and Non-Sensitive

When:DSA runs 2023-10-06 — 2025-01-31 2023.10 — 2024.02.

Access method: One-Off

Data-controller type: DEPARTMENT OF HEALTH AND SOCIAL CARE

Sublicensing allowed: No

Datasets:

Demographics
Maternity Services Data Set (MSDS) v2

Objectives:

The Department of Health and Social Care (DHSC) requires access to NHS England data for the purpose of the following project: Infant Feeding Survey (IFS).

DHSC has commissioned Ipsos to run the Infant Feeding Survey (IFS). Access is required by Ipsos, on behalf of DHSC, to select the survey sample, carry out the mailing of the questionnaires and send the associated reminders.

The IFS is a well-established survey having been run periodically since 1975. This will be the ninth wave of the survey. The principal purpose of the survey is to collect data that will provide national estimates on the incidence, prevalence and duration of breastfeeding and other feeding practices adopted by mothers during the first eight to ten months after their baby is born. The survey is a key commitment from the government as part of its childhood obesity plan.

The following is a summary of the aims of IFS 2023:
to examine trends in infant feeding practices, comparing changes between 2010 and 2023/24;
to investigate variations in feeding practices among mothers from different ethnic groups and deprivation levels;
to understand the sources of information and support accessed by mothers for help with infant feeding and to determine the association between these and infant feeding practices;
to identify the factors associated with mothers feeding intentions and feeding practices adopted in the early weeks;
to establish the age at which solid foods are introduced and to examine practices associated with introducing solid foods up to 10 months;
to measure the proportion of mothers who smoke, use e-cigarettes and drink alcohol during pregnancy and to look at patterns of smoking, e-cigarette use and alcohol consumption before pregnancy and post-birth; and,
to measure levels of awareness of and registration on the Healthy Start scheme and understand how Healthy Start pre-payment cards are being used.
The current sampling design is to draw the sample from a single month of births. An estimated 26,483 mothers in England will be invited to participate in the survey.

Mothers will be asked to complete a different questionnaire at three specific stages, relating to the age of their baby:
Questionnaire One when the baby is between 10 to 12 weeks old.
Questionnaire Two when the baby is between 16 to 24 weeks old.
Questionnaire Three when the baby is between 32 and 40 weeks old.
Mothers who indicate they have given birth to multiple babies (in the same pregnancy) will be asked to complete an additional Multiple Births Questionnaire with Questionnaire Two when the child is between 16 to 24 weeks old.

The following NHS England Data will be accessed:
Maternity Services Data Set (MSDS) - necessary to identify mothers who have given birth in order to draw the sample frame for the survey.
Demographics - necessary to obtain the associated variables for mailing the survey, sending SMS (Short Message/Messaging Service) text message invites and reminders and obtaining a limited number of variables for sampling and analysis.

The Data will be minimised as follows:

NHS England will provide two types of extracts of data at different points in the process. Extract #1 will assist Ipsos to draw the sample of mothers selected for inclusion. Extract #2 will contain the contact details which Ipsos will use to invite the selected mothers to participate in the survey. NHS England will filter each extract to exclude ineligible mothers according to the inclusion and exclusion criteria provided by Ipsos.

Extract #1 will include all mothers meeting the following criteria:
i. Mother gave birth during the month chosen for the sample (month to be determined from the point this Data Sharing Agreement (DSA) is signed by all parties;
ii. Mothers home address is in England;
iii. Mother was aged 16 or over at the time of giving birth;
iv. Mother is not recorded as deceased;
v. The pregnancy was not recorded as a concealed pregnancy*;
vi. Baby is not recorded as deceased;
vii. Babys current postcode is the same as mothers current postcode*.

*These criteria are intended to minimise the risk of including instances of surrogacy or instances where the baby has been adopted or fostered.

Extract #1 will contain only Person IDs for each mother and baby, mothers postcode and NHS Trust code. Person ID of the baby is required to inform Ipsos of mothers with multiple births (to determine whether certain bias is needed). NHS Trust code will also be used to determine bias if needed.

100% of mothers whose ethnicity is not white British is needed at this stage to allow Ipsos to understand the geographical representation across all mothers regardless of ethnicity. This is to allow Ipsos to determine whether certain bias is needed against certain postcodes (when determining the 50% of mothers whose ethnicity is white British).

Ipsos will then draw the sample using these variables and send NHS England back a list of the ID numbers selected for the survey sample. This will consist of roughly 50% of mothers whose ethnicity is white British alongside 100% of mothers whose ethnicity is not white British.

Extract #2 will include data for only mothers whose Mother's Person ID numbers are returned by Ipsos and who meet the following criteria at the time of the data extract:
i. Mothers home address is in England;
ii. Mother is not recorded as deceased;
iii. Baby is not recorded as deceased;
iv. Babys current postcode is the same as mothers current postcode*.

Extract #2 will contain the following variables required for mailing and contact purposes:
Mothers forename
Mothers surname
Mothers address including postcode
Mothers mobile phone number

Extract #2 will also contain the following variables required For Ipsos to generate 'the sample file:
Mothers Person ID
NHS Site code (of birth)
Postcode
Mobile Phone indicator
Patient Date of Birth (Mother)
Gender (Mother)
Ethnic group (Mother)
Delivery Place
Delivery method
Maternal Critical Incident Indicator
Number of babies born at delivery
Patient date of birth (Baby / babies)
Breast milk given for first feed (Baby / babies)
Baby admitted to neonatal critical care (Baby / babies)

Ipsos will generate a pseudonymised patient unique identifier on receipt of Extract #2 which will be used for the mailing and contact purposes. These IDs will differ to the Mothers Person ID from NHS England. The Mothers Person ID is required as Ipsos will require updates on the mothers throughout all disseminations under this Data Sharing Agreement which NHS England will maintain. The Ipsos generated pseudonymised patient unique identifier is generated to minimise risk (as it is shared with the contact and mailing processors and the mothers), and allows Ipsos to apply their own indicators (such as multiple birth mothers).

Ipsos require this sample file data to carry out analysis of the cohort to understand :
1) the sample Ipsos select is representative, by using stratification to ensure the random sample looks like the population and is not (by chance) skewed to a particular group,
2) to assess non-response bias, by looking at how similar those who respond are to the overall population,
3) in order to design weighting to ensure the respondents when their data is used for analysis match the population as closely as possible. Many of these variables being requested are strongly correlated with likelihood to breastfeed (e.g. older mothers are more likely to breastfeed than younger mothers, babies born by c-section tend to be breastfed for a shorter time than those born by vaginal delivery). Without knowing how closely the respondents reflect the population for these factors, Ipsos estimates of breastfeeding rates, for example, could be heavily skewed.

Questionnaires will be sent to all mothers NHS England send to Ipsos under Extract #2. On approximately a weekly basis (while questionnaires 1, 2, and 3 remain ongoing), Ipsos will require a list of mothers who still meet the criteria at time of data extract:
i. Mothers home address is in England;
ii. Mother is not recorded as deceased;
iii. Baby is not recorded as deceased;
iv. Babys current postcode is the same as mothers current postcode*.

Ipsos require the mothers Person ID field only. Only mothers who still meet the inclusion criteria will be included.

This update is 'Extract #3'. Extract#3 will be produced and disseminated to Ipsos on a weekly basis (approximately) until the end of Questionnaire 3. This approach informs Ipsos of mothers who should no longer be contacted.

The 2023 IFS needs to be based on a representative sample of the population in England. It is important that responses received provide reliable data on different ethnic groups, levels of deprivation, and geographical spread of mothers who gave birth in a specified month for valid generalisable conclusions to be drawn. IFS will select a cohort from within the total eligible which is representative in terms of the listed characteristics.

DHSC is the sponsor and controller for this project. The Diet, Obesity and Health Behaviours Directorate at Office for Health Improvement and Disparities (OHID) (an executive agency of DHSC) has responsibility for delivering the survey and has commissioned Ipsos on its behalf to manage the delivery of the Infant Feeding Survey.

The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.

The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This processing is in the public interest because the survey will collect data on practices, experiences, attitudes, and behaviours related to infant feeding, as well as some broader lifestyle behaviours. The findings from this survey will provide a vital evidence base, which has been lacking since the 2010 Infant Feeding Survey, to support the government in monitoring the uptake of infant feeding advice and developing policy and guidance in this area

The funding is provided by DHSC, who have commissioned the IFS. The funding is specifically for the IFS described.

Ipsos is a processor acting under the instructions of DHSC. Ipsos role is limited to drawing the sample frame for the survey, sending out questionnaires and reminders, collection of responses and analysis of the results of the survey.

Formara provides support to Ipsos and will be involved in sending out invitation and reminder letters to mothers offering them the option to take part in the survey.

For the SMS message reminders, Ipsos UK will use TxtLocal Limited. A file of just telephone numbers and unique identifiers created for the survey will be uploaded to this service.

Data will be accessed by:
Ipsos project team: Files containing sample data will only be accessible to the project team and they will be held in a secure folder that only project team members have access to. These sample files will also be encrypted, and password protected.

Some limited data will be shared with Ipsos suppliers (in this case Formara; printing, and TxtLocal Ltd; SMS reminders) for the operations of the survey. Details of their access is listed below:

Formara: Names and postal addresses will be shared with the printing supplier to send out the invitation letters. These will be accompanied by a unique ID so that the record can be matched back to the full sample held by Ipsos.

TxtLocal Ltd: Mobile numbers will be uploaded to TxtLocal Ltd to send out the SMS reminders. These will be accompanied by a unique ID so that the record can be matched back to the full sample held by Ipsos.

This Infant feeding survey is the latest of a series of surveys that began in 1975. Data collected from these surveys has been widely used and data from the previous Infant Feeding Survey is publicly available on NHS England website and the UK Data Service.

Ipsos has tested the views of mothers and patients on the use of their details for this survey and other surveys of relevance. As part of the questionnaire development process for this survey, Ipsos has carried out cognitive testing with 28 mothers who fit the same profile as the target survey population. Cognitive testing involves testing the questionnaire and survey materials with individuals to test their comprehension, recall, judgement, and response to the questionnaire and survey materials.

As part of this process, and to fulfil the obligations as part of the support under section 251 of the NHS Act 2006, the study sought patients views on the use of their details for the purposes of this survey, without receiving their prior consent.

All of the mothers the study team spoke to were happy for their details to be used for the purposes of this survey. No reservations or concerns were raised about their details being used to send them a survey through the mail, nor to send them reminders via SMS.

The Mothers the study team spoke to understood the purpose of the survey and recognised the value of the information being gathered. Mothers were happy and felt further reassured that they would be able to opt out from future communications regarding this survey or would ignore the letter and SMS.

Ipsos also ran the Maternity Survey between 2021 and 2023. This survey is part of the NHS Patient Survey Programme, run by NHS England and Care Quality Commission, and involves the same population. Cognitive testing has been carried out for the Maternity survey. Ipsos again checked views on personal information being used for research purposes without consent. The majority of patients were comfortable with this approach and cited it as being similar to customer experience surveys they are sent from their banks and dentists. A key consideration was reassurance about who was conducting the survey and there was a need for transparency.

The Study team have learnt from the cognitive testing processes of both the Infant Feeding Survey, and also the NHS Patient Survey Programme that most patients considered SMS messages to be a mainstream method of communication. Some stated that who the SMS was from was important and that an SMS message that came from a name gave them more reassurance when compared to an unknown number (for example, DHSC Surveys).

Expected Benefits:

The direct benefit of collecting this Data from NHS England will be that the sample Ipsos are selecting reflects the population, provides additional information for analysis (which reduces the burden on respondents and ensures better standardisation) and reduces the risk of Ipsos contacting bereaved families.

Indirect benefits on completion of the survey:
The Infant Feeding Survey 2023 is a key commitment from government as part of the childhood obesity plan, and data gathered from it will be a critical element of the evidence base on infant feeding. It will provide vital information to monitor efficacy of current policies and inform the development of new policies to ensure that all children are provided with the best start in life. Information gathered through the Infant Feeding Survey 2023 will also help government to understand the potential impact of any future actions implemented as part of the commitment to preventing childhood obesity and supporting optimal health in the first 1000 days.

The Infant Feeding Survey 2023 will provide valuable information on infant feeding behaviours including internationally comparable data on prevalence and duration of breastfeeding, the use of foods and drinks other than breastmilk in infancy, as well as data on some broader lifestyle behaviours. Since 2010 there has been no detailed, quantitative, and nationally representative collection of data on infant feeding behaviours in England. The findings from this study will provide a vital evidence base, adding to the scientific evidence around improving the health of children and families, and supporting the government to monitor the uptake of nutrition advice and develop policy and guidance on infant feeding.

With the update of this data, breastfeeding services from government and other sectors can use the data to improve their policies and make sure that service offerings to mothers of young babies are informed by the latest available evidence. Mothers will therefore benefit from improved policy and guidance around infant feeding that will ensure that information and support they receive is based on current evidence.

The findings from this survey will provide a vital evidence base, which has been lacking since the 2010 Infant Feeding Survey, to support government and other sectors in monitoring infant feeding practices and developing policy and guidance in this area.

The Infant Feeding Survey will provide detailed information on feeding practices across the first year of a babys life, and the factors which may impact a mothers decision around feeding. This information will be used by DHSC and others to better understand how parents in England are feeding their babies and inform policy, guidance, and support services.

The findings will be published, and the anonymised dataset will be made available on the UK Data Service for other organisations and researchers to access, providing much needed updated evidence for anyone working in this area and fulfilling the responsibility to build the scientific evidence around improving the health of children and families.

The Infant Feeding Survey ran every 5 years from 1975 until 2010, when it was discontinued. Calls for the survey to be reinstated have come from charities, public bodies and academics working in the field, among others. Therefore, the Infant Feeding Survey 2023 is greatly anticipated by a wide range of stakeholders, and it is expected that the report and data generated by the survey will be warmly welcomed and well publicised.

The Infant Feeding Survey has previously received status as a National Statistic in recognition of the trustworthiness, quality and public value of the statistics generated, and the 2023 survey will also seek certification as a national statistic upon completion.

Those sponsoring the survey hold key positions within the Office for Health Improvement and Disparities (an office of the Department for Health and Social Care) and are therefore in a position to directly implement the findings through the development of national policy and guidance based on these results.

The development of the survey has involved a wide range of stakeholders both within and outside government. Key stakeholders are the Scientific Advisory Committee on Nutrition Subgroup on Maternal and Child Nutrition (SMCN), the IFS Project Board and internal stakeholder from the relevant policy areas. Input has also been garnered from key organisations who work in the field of infant feeding, and the opportunity to provide feedback on the updates desired for the infant feeding survey has been provided to the relevant stakeholders. Organisations represented included, World Breastfeeding Trends Initiative, la Leche League, Association of Breastfeeding Mothers, Better Breastfeeding, National Childbirth Trust, Institute of Health Visiting, Care Quality Commission, UNICEF, Swansea University, Baby Milk Action, UKAMB, Hearts Milk Bank, Food Standards Agency, First Steps Nutrition Trust, Royal College of Midwifery, and the Breastfeeding Network.

Outputs:

For the Data under this Data Sharing Agreement, the direct output from use of the data will help reduce the risk that Ipsos do not contact mothers who have suffered a bereavement following the death of their baby, or have passed away themselves thus preventing distress to surviving family members.

The data from the sample file will contribute (indirectly) towards:

A consolidated report of the survey findings. This report will be structured largely around the themes contained within each questionnaire. The content and purpose of the report is yet to be discussed and agreed by Ipsos and DHSC. This will include aggregate results across the survey. No personal identifiable information on respondents will be included in the report. Where appropriate, suppressions will be applied to ensure that no respondent can be identified from the dataset.

A technical report. The technical report will aim to provide more technical users of the survey data with additional information on the survey methodology. This will include detail on the survey methodologies such as: questionnaire development, sampling procedure, and reporting. The technical report aims to ensure that appropriate analysis of the report is carried out and limitations of the data are understood.

An open-access dataset. The IFS dataset will be made available to access by the public. This will include respondent IDs, and will not include any personal identifiable information on respondents. Where appropriate, suppression will be applied to ensure that no respondent can be identified from the dataset.

The dissemination and communication approach has not yet been confirmed with DHSC. However, the dissemination and communication approach will aim to facilitate the dissemination of the survey to be in the interest of stakeholders and the public.

Processing:

Drawing the Sample - Extract #1:

NHS England will provide a set of identifiable records meeting the inclusion criteria defined in section 5a from the MSDS v2 and Demographics dataset to Ipsos. The data will contain NHS Trust code, Ethic category of Mother and one identifying data item: Postcode. Postcode is required to ensure that Ipsos have a representative sample across England and that Ipsos can employ an incentive strategy that will seek to boost responses from the most deprived communities in England.

The ethnic category of each record is required for Ipsos to employ an ethnicity boost strategy with the aim to increase survey responses from those groups who tend to be less likely to respond to surveys.

Mailing and contact - Extract #2:

Ipsos will draw a sample of records from Extract #1 based on the sampling approach agreed with DHSC.

Ipsos will send the sampled unique identifiers back to NHS England who will provide the relevant records from MSDS v2 and Demographics dataset to Ipsos.

On receipt, Ipsos will generate unique study IDs and will share data specific to postal mailing to Formara, and SMS text messaging to TxtLocal Ltd.

Formaras role is restricted to postal mailings only. TxtLocal Ltd role is limited to SMS text messaging only.

Ipsos will inform Formara/TxtLocal Ltd to remove study IDs (and its respective contact detail) when necessary (following Extract #3 updates from NHS England or withdrawal).

For the sample file data, Ipsos will process the data to ensure the sample selected represents and matches the population as a whole.

Extract #3:

For the subsequent mailings of questionnaires two and three (and reminders of all 3 questionnaires), Ipsos will require a refresh of the data in extract 2 to account for changes. This extract will carry out the same filtering as specified under Extract #2. This will be on a weekly basis until no longer required at the end of Questionnaire 3 (when the baby is between 32 and 40 weeks old).

Where Ipsos do not receive the Person ID of mothers who no longer meet the eligibility criteria, Ipsos will exclude them from further contact. This is to reduce the risk of contacting someone who has experienced bereavement or another sensitive circumstance.

The sample data will be stored on servers at Ipsos.

Ipsos uses offsite backup services provided by Rackspace UK.

Formara will store their data on site within Formara, in secure server rooms.

TxtLocal Ltd will store their data on site within TxtLocal Ltd.

The Data stored at Ipsos, Formara, and TxtLocal Ltd will be accessed by authorised personnel via remote access at each respective organisation. The Data will always remain on servers at each respective organisation.

Ipsos (substantive) employees working on this survey will be able to access the Data remotely from anywhere within the EEA. The Data will remain on the servers at Ipsos at all times.

The Data will be accessed by authorised personnel via remote access.

The Controller must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
- Access controls granting users the minimum level of access required are in place;
- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
- Multifactor authentication (MFA) is required for remote access;
- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
- All remote access is undertaken within the scope of the organisations DSPT (or other security arrangements as per this DSA) and complies with the organisations remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

As outlined above, Formara and TxtLocal Ltd will be sent Data specific for the survey mailing and reminders.

The NHS England Data Formara and TxtLocal Ltd receive will not leave England at any time.

The NHS England Data Ipsos receive will not leave the EEA at any time.

Aside from the Data shared with Formara and TxtLocal Ltd, the Data Ipsos holds will only be accessed by individuals within the project team, based in Ipsos Public Affairs Division, and Operational teams.

Ipsos will produce subsets of the Data that will be accessed by suppliers with the operation of the survey; Formara and TxtLocal Ltd.

Data shared with Formara will contain only survey ID, full names and addresses.

Data shared with TxtLocal Ltd will contain only phone numbers and survey ID.

Access to the data, including the relevant subsets, will be restricted to substantive employees of Ipsos and Formara/TxtLocal Ltd.

The subsets used by Formara/TxtLocal Ltd will be securely uploaded to Formara/TxtLocal Ltd by a member of the project team at Ipsos. This upload will then be securely deleted from Formara/TxtLocal Ltd once the final postal correspondence/SMS text message has been issued (towards the end of Questionnaire 3).

DHSC is not permitted to access the sample data. A final dataset of survey responses will be shared with DHSC after fieldwork. This dataset will be fully anonymised and will include some sample variables. These sample variables are aggregated analysis variables that has undergone NHS England suppression rules. As this survey is a national survey and the population is larger than 1,000, no small cell suppressions are required, and these variables can be included in respondent level data files. This is also because the survey element provides additional confidentiality the responses will not be a census and those conducting the analysis will not know who has taken part.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

CQC Adult Inpatient Survey Bespoke HES Extraction — DARS-NIC-407121-Z8K8K

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, No (Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 - s261 - 'Other dissemination of information'

Purposes: No (Research)

Sensitive: Sensitive

When:DSA runs 2021-03-18 — 2022-03-17 2021.06 — 2021.11.