Dear Alastair 

Health and Wellbeing Census in Scotland

I am writing about the Health and Wellbeing Census which has been taking place in schools in Scotland in the 2021/22 academic year.

The Health and Wellbeing Census is an innovative approach to statistics production by the Scottish Government. By developing standard questions and providing access to a digital survey platform to all 32 Scottish local authorities, the Scottish Government has provided the data infrastructure for local authorities to collect data on all children from P5 to S6 (approximately age 8.5 to 18) who attend publicly funded primary and secondary schools in Scotland. These data can then be used by the local authorities to support planning and service delivery and, once shared by local authorities, by the Scottish Government to produce statistics at a national level. This is the first year of the Census and local authorities who are participating have now completed the data collection for the academic year 2021/22. 

We have been contacted by several individuals who have raised concerns with us regarding multiple aspects of the Health and Wellbeing Census. We have undertaken a high-level review against the Code of Practice of Statistics to allow us to look into these. This letter shares our findings.

Our remit does not extend to the regulation of the data that local authorities collect themselves. Our review, and this letter, has focused on the aspects of the co-ordination of the statistics that are the responsibility of the Scottish Government.

We commend the Scottish Government for its commitment to working to improve the data and statistics that are available about children and young people living in Scotland. This is something that we advocate. Developing and delivering a new national approach to gathering statistical information was always going to be an ambitious task. We acknowledge the challenges that you and local authorities have dealt with, which include significant negative media attention and the withdrawal of a number of local authorities from undertaking the Health and Wellbeing Census.

We consider that the Scottish Government under-estimated the significance that the new survey would have for parents, the wider public and users of statistics, and the extent of the questions and concerns that would arise from rolling out a new survey on this scale. Many of these questions and concerns have been raised publicly and via freedom of information requests to the Scottish Government. More could have been done by the Scottish Government to address these questions and concerns and support greater public confidence in the Health and Wellbeing Census.

We understand that the Health and Wellbeing Census is intended to run on a regular basis. In doing so, to support trustworthiness in these statistics, the Scottish Government must learn from its experiences this academic year and be more open, transparent and engage more fully with users in future. As part of this, we encourage you to act on our recommendations.

Provide greater clarity on the reasons for the chosen approach

There are existing statistical collections regarding young people in Scotland. These include the Health Behaviour in School-Aged Children Survey which collects data on a sample of young people and was last run in Scotland in 2022. Additionally, local authorities have historically carried out their own local data collections to help them plan and deliver the services they are legally required to do.

There is little published information on the development of the Health and Wellbeing Census, particularly on decisions by the Scottish Government to adopt a Census approach. It is important that those with an interest in the Health and Wellbeing Census are able to access this information.

• Scottish Government should ensure that the decisions made on the chosen approach are transparent and publicly accessible. Making this information available will support greater public understanding of the needs for and benefits of a Census approach. For example, where the views of children, parents or experts were sought, then it would be helpful to explain this process, including timeframes of the consultations or pilots.

Provide more information and reassurance on the data protection arrangements in place

The data protection arrangements for the Health and Wellbeing Census are complex. Local authorities will collect and hold responses provided by children and young people and share these with analysts at the Scottish Government using secure transfer systems. This means that there are several Data Controllers of the Health and Wellbeing Census data. The Scottish Candidate Number is being used as an identifier in the data. 

• We recommend that Scottish Government seek further external assurance, such as that which can be provided by the Information Commissioner’s Office, on the data protection arrangements that are in place at all stages of the Health and Wellbeing Census. We consider this is particularly important on issues outlined in the Health and Wellbeing Census: frequently asked questions, such as when and why local authorities may identify individual children from the responses provided, and the use of Health and Wellbeing Census data and linked datasets. This will support the trustworthiness of the Census with parents and the wider public. 

Provide greater transparency on question development, testing and ethics approval

There has been significant media coverage and several freedom of information requests to the Scottish Government regarding the appropriateness of the question on sexual experience in the Health and Wellbeing Census that is asked to S4 (aged approximately 15 years) children and above.

Two other national surveys in Scotland ask questions about sexual experience to children and young people. Questions on sexual experience are asked to children aged 15 years and over in the Health Behaviour in School-Aged Children Survey, and to children aged 14 in the Growing up in Scotland Study Sweep 10. The Scottish Government team told us that the Health and Wellbeing Census sexual experience question asked to children in S4 upwards aligns with the Curriculum for Excellence Relationships, Sexual Health and Parenting (RSHP) educational resource.

• 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.

Share your plans for the statistics with users

A number of local authorities have not participated in the Health and Wellbeing Census in the 2021/22 academic year. Once published, users may have issues about the quality of the new statistics produced from the data.

• Scottish Government must be transparent about the quality assurance processes it plans to undertake, particularly with regards to bias and limitations of the data. We expect Scottish Government to engage with us as it develops these plans.
• Scottish Government should keep users updated on its plans for the statistics and ensure that the views of users of the new statistics are informing these plans.
• We recommend that Scottish Government publish information on any proposed plans to share and link data with other organisations including the public benefits of this as soon as these become firmer. 

We would like to thank your team for their continued cooperation. Please do not hesitate to get in touch if you would like to discuss any aspects of this letter further or if we can offer further help as you consider your response to these recommendations.

Yours sincerely

Ed Humpherson
Director General for Regulation