Health and Wellbeing Census Ethics Peer Review Group: FOI release

Information requested

1. Detail of the Health and Wellbeing Census Ethics Peer Review Group.

2. Information about the process undertaken by the Ethics Peer Review Group.

3. Information on the collection of the Scottish Candidate Number.

4. Information on consent in the HBSC and HWB Census.

5. Reasons for the collection of the SCN rather than date of birth and postcode.

6. Information on the review of the Health and Wellbeing Census following the Director General of the Office of Statistics Regulation letter to Scottish Government dated 27 July 2022.

Response

I enclose a copy of most of the information you requested.

Question 1: Detail of the Health and Wellbeing Census Ethics Peer Review Group

You asked for the number of people in the Health and Wellbeing Census Ethics Peer Review Group. The Ethics Peer Review Group consisted of three Ethical Advisers, who were independent of the project.

You asked about their role in the group, and their standard job titles and departments for their day-to-day roles. The Ethics Peer Review Group for the Health and Wellbeing Census consisted of two Senior Principal Researchers, one of which was located in Children and Families Analysis, and one based in Communities Analysis Division. The third member was Audrey MacDougall, the Scottish Government’s Chief Social Researcher. All peer reviewers are drawn from a pool of experienced social researchers in Scottish Government operating at C1 (Principal Researcher) level and above.

Full details of the generality of Ethics Peer Review process is already in the public domain: Scottish Government social research: protocols and guidance. The Health and Wellbeing Census project triggered an ethics peer review which was escalated to the highest point within the Scottish Government ethics peer review process, to ensure scrutiny from the Chief Social Researcher. This is rarely used. Normally an ethics review would be a group of senior researchers only from across different parts of Scottish Government.

You asked for the members’ role in the group. The members of the peer review group had the responsibility of reviewing the submitted checklist and recommending adequate remedial action.

You asked about their relevant qualifications for the profession. Members of the Peer Review Panel were all members of the Government Social Research Profession, at Principal Research Officer or above. Full details of the qualifications and experience required for Government Social Research profession members is in the public domain: Government Social Research Technical Framework.

You asked for examples of other Scottish Government research projects that have been through an internal Ethics Peer Review process in the last five years, and whether this was completed by this group or different internal Ethics Peer Review Groups. Ethical Peer Reviews are drawn from a pool of peer reviewers (Principal and Senior Principal Research Officers) from across the Scottish Government Social Research Profession so are not necessarily the same three people who reviewed the Health and Wellbeing Census. Cases of other research where ethical peer reviews have taken place in the last 5 years include:

• Social Security Experience Panels (2018)
• Understanding repeat violent victimisation in Scotland (2019)
• Weapons in Schools (2019)
• Domestic Abuse (Scotland) Act research (2021)
• Understanding how children and young people benefit from nature (2022)

Question 2: Information about the process undertaken by the Ethics Peer Review Group

You asked for documentation and correspondence around the decision to use an Ethics Peer Review rather than a fully independent ethics review by an external body. An external ethics review is relevant in some circumstances. External scrutiny was not considered necessary for the Health and Wellbeing Census project. The ethics checklist identified the HWB Census would not cover any of the identified populations requiring an external ethics review, and the census itself is not subject to procurement activities, and the questions were largely drawn from those already asked in existing surveys.

You asked for information provided to the Ethics Peer Review Group, any questions they asked or clarifications they requested, the written report (and date) confirming approval of the Health and 

Wellbeing Census and any caveats or recommendations, and any responses from those involved in the Health and Wellbeing Census to the Ethics Peer Review Group’s written report and approval. This is included in the attached Enclosures document.

Ethics Peer Review is an iterative process to identify risks and issues, and recommend remedial action. The final product from the Ethics Peer Review is a signed off Ethics Check list. The Summary of key sensitivities section of the checklist sets out the sensitivities and mitigations identified. The Ethics Checklist is included in the enclosures document.

Question 3: Information on the collection of the Scottish Candidate Number

You asked questions on the collection of the Scottish Candidate Number. You asked if the Ethics Review Group were aware that children’s responses were being logged against their Scottish Candidate Number? Yes, the Ethics checklist section GSR Principle 5: Non-disclosure of identity, personal information and privacy impact (b) Research Findings and Report sets out the SCN will be captured for every pupil completing the questionnaire in order to minimise the amount of pupil characteristics each pupil needs to self-complete at the start of questionnaire.

You asked if the Ethics Review Group were aware that in many cases, children and their parents have never been formally issued with their Scottish Candidate Number to understand what it is and what information it contains about them in the number itself. Every child receiving education in Scotland’s publicly funded schools is allocated an SCN. The SCN is generated by the Scottish Qualifications Authority and blocks of SCNs are allocated to each school, and an SCN is allocated to individual pupils on creation of their pupil record on the School Management Information system). The SCN in itself does not contain information about pupils as it is simply a unique reference number.

You asked if the Ethics Peer Review Group were aware that in at least one council area, the Scottish Candidate Number is also the children’s school email address which also then instantly reveals their name in directories easily accessed by over 100,000 people, but the privacy notices said that direct contact details and names were not being captured? This was not known in 2019, when the Ethics Checklist and Peer Review process was undertaken. This was identified in 2022, when local authorities were collecting their data. SG staff are regularly required to undergo data protection training, and there are clear policies and procedures in place to ensure that staff only access and use data for its intended purpose. It is the responsibility of local authorities to ensure that access to their own data is kept secure, and that access is restricted to those who need access to it for its intended purpose.

You asked if the Ethics Peer Review Group were aware that the Scottish Candidate Number has been used to cross link pupils answers with a lot of other personal data being held on them. Yes the Ethics Peer Review Group were aware data would be linked using the SCN. This is set out in the Ethics checklist section GSR Principle 5: Non-disclosure of identity, personal information and privacy impact (b) Research Findings and Report.

The SG Privacy Notice and DPIA, both published, also state clearly the responses would be linked to the pupil census to attach the required characteristic variables for analysis. Only those characteristics that are required are linked, for each piece of analysis. External researchers can apply via the standard process to access and link data for research that is of public benefit. The Scottish Government Privacy Notice also sets out any sharing or linkage of data will be done under the strict control of Scottish Government, and will be consistent with Scottish Government data policy and the National Data Linkage Guiding Principles. Decisions on the sharing or linkage of data will be taken in consultation with relevant colleagues and individuals within and outwith Scottish Government as part of a Data Access Panel. At all times the rights of the individual children and young people under the UK GDPR and other relevant legislation will be ensured.

You asked if the Ethics Review Group were aware that many children and parents, and their teachers, have not been properly issued with clear age-appropriate information of the extent to which other personal data is already held on them from the automatic Annual Pupil Census, and that this data is already linked with their Scottish Candidate Number. The Scottish Government publishes privacy notices and DPIAs for the education data they collect and process. It is the responsibility of local authorities to ensure that pupils, teachers and parents are kept informed about how data they process will be used (and shared) and to ensure that such information provided is reviewed regularly to ensure it is in line with best practice.

You asked if the Ethics Peer Review Group were aware that some questions in the Health and Wellbeing Census asked children to disclose personal sensitive data about whether their (identifiable) parents and carers suffered from addictions or poor mental/physical health, but parents and carers did not have access to these questions and did not actively consent, meaning their child could participate without their knowledge if they failed to opt-out for any reason? The HWB Census does contain questions on whether pupils care for someone they live with due to disability, long term illness, or a mental health problem. This is similar to questions on caring responsibilities asked in other surveys. For example the Scottish Adolescent Lifestyle and Substance Use Survey (SALSUS) asked pupils if they care for or look after someone in your home because, for example, they have a long-term illness or disability. Similarly, the Scottish Health Survey asks children if they provide any regular help or care for any sick, disabled or frail person.

However, parents of pupils are not identifiable through the HWB Census data or by linking to the Pupil Census data. Pupil Census data held by Scottish Government does not contain parental information directly, and the Scottish Government cannot identify pupils from the SCN. Local authorities, prior to collecting data, are responsible for providing privacy notices to parents/carers and to pupils.

You noted parents did not have access to the questions so could not actively consent. As the HWB Census is a local authority data collection, it is for local authorities to make decisions on the approach to consent. It is important to note the lawful basis for local authorities and Scottish Government to process the Health and Wellbeing Census data is Article 6 (1)(e) public task.

Consent is not the lawful basis for collecting this data. However, as the Census is not mandatory, then parents/carers and/or their child(ren) can “opt-out” of taking part. This is set out in both the Scottish Government DPIA and Privacy Notice. UK GDPR Article5 (1) (c) says: “ Personal data shall be: (c) adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed (data minimisation)”. The HWB Census meets this principle.

The data collected is adequate, relevant and limited to the purpose identified in the DPIA in that it is sufficient to properly fulfil the local authority and Scottish Government stated purpose. The purpose for local authority data processing is to meet the duties set out in:

• the Children and Young People (Scotland) Act 2014 which requires local authorities and their relevant health board, in respect of each three year period, prepare a children’s services plan for the area of the local authority.
• the Standards in Scotland’s Schools etc. Act 2000, under which the education authority must carry out the duty with a view to achieving the strategic priorities set out in the National Improvement Framework.
• the Local Government in Scotland Act 2003 states that a local authority has power to do anything which it considers is likely to promote or improve the well-being of its area and persons within that area.

The purpose for SG data processing is for Ministers to meet the duties set out in set out in:

• the National Health Service (Scotland) Act 1978 (Scottish Ministers have a duty “to promote the improvement of the physical and mental health of the people of Scotland”);
• the Standards in Scotland’s Schools etc. Act 2000 (Scottish Ministers have “to ensure that schools managed by education authorities, grant-aided schools, and hostels provided and maintained by education authorities for pupils, are health-promoting”); and
• the Local Government (Scotland) Act 1973 every local authority and every joint committee or joint board shall, within such period as the appropriate Minister may require, make to that Minister such reports and returns and give him such information with respect to their functions as the Minister may require, or as may be required by either House of Parliament.

While the approach to consent (due to participation in the Census not being mandatory) is a decision for local authorities, Scottish Government provided guidance through the Implementation Group. The approach to consent as set out in SG guidance was that parents/carers can "opt-out" their child(ren) from taking part in the Census for all pupils aged 15 years and younger. For those aged 16 years and older, it was for each local authority to decide whether the parent/carer can "opt-out" their child(ren). In addition to parents/carers "opting out" their child(ren), individual children could themselves "opt-out" of taking part in the Census (even if their parent/carer did not "opt them out").

Question 4: Information on consent in the HBSC and HWB Census

You asked why the Scottish Government felt it relevant to directly compare the consent process of the HBSC with the Health and Wellbeing Census as the methodologies are very different. The HBSC survey Parent Carers information sheet states an opt-out approach to consent. This is the same approach local authorities could implement for the Health and Wellbeing Census.

You note the HBSC is fully anonymous, it does not require children to submit their personal identifiers which can also identify their parents, it does not cross link the data with other data already held on those individuals and does not store the data with the intention of further crosslinking of individuals’ data in future, which means that passive consent is appropriate and independently ethically approved. Our understanding is that although the HBSC does not collect the SCN, it does collect information on a number of pupil characteristics which, when looked at together, may possibly make pupils identifiable from the data gathered in the HBSC survey. It is important to note that the Scottish Government cannot identify a pupil, or their parents, from the SCN as it does not have access to their name or address linked to this.

The consent processes of both surveys were likened as it is the same in both cases, and there are many similarities in the purpose of the data collection and the data collected. Both are collected under the lawful basis of public task. The HBSC and HWB Census both contain topics, some of which are sensitive, relating to health and wellbeing. While many of these are asked in surveys around the world, questions on sexual health, smoking and vaping, alcohol use, drug use etc. are similar in both surveys.

The methodologies are similar in that both surveys gather responses from school aged children and young people in a class setting. Both require the support of schools and teachers, and local authorities to enable the data collection. The HBSC data can also be made available for further research, contributing to the evidence base around child and adolescent health and well-being. The HWB Census data is an important evidence base for researchers to contribute to the evidence on children and young people’s health and wellbeing, in addition to the key purpose of providing evidence for local authorities, community planning partnerships, SG and others to progress improvement in children and young people’s health and wellbeing.

A key difference to the approach taken with the HWB Census over the HBSC is that HWB Census requires each local authority to undertake their own Census, so that they have access to their own data first and foremost. This provides local authorities (and their local partners) with rich statistical data for their own purposes. Another valuable aspect to the HWB Census is the potential for linking this information with other datasets to provide new evidence and analysis on children and young people’s health and wellbeing to support policy development and improvement activity. It is important to note for both data sources, where data is made available for further research and analysis, this is done with anonymised/pseudonymised data i.e. personal identifiers are not included or are pseudonymised.

You asked if the Scottish Government and/or the Ethics Review Group compared and contrasted the two different methodologies and the ethical and legal implications for the chosen method of consent for the different methodologies? A comparison with the HBSC consent process was not specified in the Ethics Checklist, however consent for the HWB Census is set out in section GSR Principle 2: Participation based on valid informed consent of the Ethics Checklist.

You asked if the Scottish Government and/or the Ethics Review Group considered if the controversial approach and simultaneous timing of the Health and Wellbeing Census could impact the HBSC survey? As reducing the burden of data collection on schools and pupils was one of the key principles in the development of the HWB Census, the timing of both collections, and other school based collections, were carefully considered. The HWB Census was delayed due to a number of factors (in particular the Covid pandemic). The HBSC provides national level data only, and international comparisons. Each local authority was responsible for deciding if they wished to undertake their own HWB Census and/or take part in the HBSC survey in the 2021/22 school year.

Question 5: Reasons for the collection of the SCN rather than date of birth and postcode

You asked about the collection of date of birth and home postcode in place of SCN. You asked what is the real reason that the Scottish Government made the decision that local authorities could not simply issue children with a slip of paper with their date of birth and postcode instead, meaning that Scottish Candidate Numbers would not be required? The SCN allows the data to be linked to a wide range of characteristic data when required for analysis. For example, the published SG analysis includes analysis by ethnic group, pupil sex, and additional support needs which would not be possible (or less reliable) if only date of birth and postcode only were collected. Using the SCN allows for better data linkage to occur that results in more accurate analysis to be undertaken to understand particular groups of pupils who may have poorer health and wellbeing, supporting improvement activity at all level to improve health and wellbeing of all children and young people.

You ask why the Cabinet Secretary and other ministers and officials were not properly informed about the true reasons for this? Cabinet Secretary and Ministers were informed of the collection of the SCN, and the reasons why. These are set out in response to FOI 202200270559. The enclosures document contains the correspondence with Cabinet Secretary.

You noted that pupils in the S4 Substance Use survey only needed to provide their SIMD number and asked why was this process of only providing the SIMD was not used for children in other year groups for the main survey to support anonymity? The Substance Use survey contains questions on illegal activity (including drug use). The Ethics Review checklist notes the Child Protection sub-group to the Content Group advised on child protection matters with a focus on ensuring the confidentiality of children and young people taking part in the Census would be maintained as much as possible. During the development of the questionnaires, concerns were raised around the potential impact on local authorities of child welfare concerns (for example undertaking of illegal activities or drug use). The Substance Use survey is for S4 pupils only and was created to address specific concerns around the risk of concerns if pupils were identifiable given the nature of some specific questions. For these questions, the agreed approach was to move these substance use questions into a separate anonymous survey.

You asked if the Ethics Peer Review Group approved that S4 pupils would be asked to input this number (SIMD) in relation to their personal responses, without a proper explanation being provided to those pupils that it referred to their category within Scottish Index of Multiple Deprivation, and how their category related to others. The Ethics Review Group was aware of the sensitivities of the questions and the focus from a child protection perspective. The final decisions on approaches to specific questions or response options that fell into this category were agreed by the Content Group. As the questionnaire development work continued after the Ethics Review Group had completed the Ethics Review, some final decisions on mitigations will have been made after that process had completed, but were aligned to the key sensitivities raised by the Ethics Peer Review. It is worth noting that the SIMD is an ‘area’ based indicator, and does not reflect the characteristics of any individual person (i.e. the SIMD indicates whether children and young people are living in more or less deprived areas of Scotland, but it does not identify whether individual child or young person are themselves deprived or not).

Question 6: Information on the review of the Health and Wellbeing Census following the Director General of the Office of Statistics Regulation letter to Scottish Government dated 27 July 2022

You asked about the Scottish Government response to the Office of Statistics Regulation letter dated 27 July 2022. In this letter the Director General of the Office of Statistics Regulation wrote to the Scottish Government, noting “Scottish Government needs to review the approach it took to question development for the Health and Wellbeing Census. This should include learning from previous surveys, the consultation approach that was adopted and the legal and ethical governance arrangements that are in place for each age range, particularly for the sexual experience question. The outcomes of this review should be made publicly available, and we expect Scottish Government to act on learning from this review prior to the roll out of any future Health and Wellbeing Census. This will support the trustworthiness of future Health and Wellbeing Censuses.”

You asked for confirmation of
a) the agreed scope of this review
b) the stages involved and timescales of each
c) the current status of the review
d) when this review will be published?

The review of the HWB Census includes questionnaire development, consultation in the questionnaire development, learning from other surveys, the legal and ethical arrangements, the lessons learned from the local authority implementation, and a review of the data quality of the collected data. This review is an ongoing process, with different aspects being undertaken at different stages. A review of the data quality is nearly complete and will be published on the Scottish Government website on completion Health and Wellbeing Census - gov.scot (www.gov.scot).

Information on implementation by local authorities was provided during their data collection, and further feedback will be sought when the Content Group and Implementation Group are reconvened. The Content Group will review the topics and questions, based on user need, feedback and data quality. Questionnaires will again go through the Ethics process when they have been/while they are being reviewed and updated. The review of data governance and the legal arrangements has been ongoing with the ICO and with Scottish Government Data Protection colleagues.

We plan to publish findings as each stage is completed. At this point there is not a set date, as the work is ongoing. However, the review will be completed prior to any further data collection.

An exemption under section(s) s.38(1)(b) of FOISA applies to some of the information you have requested and which can be found in the enclosed document.

About FOI

The Scottish Government is committed to publishing all information released in response to Freedom of Information requests. View all FOI responses at http://www.gov.scot/foi-responses.

FOI 202400391660 - Information Released - Annex

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