Health and Care Experience Survey 2023: privacy notice

The 2023 Health and Care Experience Survey (HACE) asks about your experiences of your General Practice; Out of Hours healthcare; care, support and help with everyday living; and caring responsibilities. 

The survey is run in partnership by the Scottish Government and Public Health Scotland (PHS). Both the Scottish Government and PHS are involved in the planning and organisation of the survey, as well as analysing and reporting on the survey responses. An approved patient survey contractor, IQVIA, has been appointed to conduct the survey fieldwork on behalf of the Scottish Government and PHS. IQVIA is a company that collects feedback from people who have used healthcare services.

This project has been approved by the Public Benefit and Privacy Panel for Health and Social Care in Scotland and its letter of approval is available online.

This privacy notice explains how your personal data is collected and used, and your rights. 

More information about how Public Health Scotland uses patient data is available online.

More information on how NHS Scotland may use your personal data is available online.

Why this survey is needed

The survey aims to provide local and national information on the quality of health and care services from the perspective of those using them. The results allow local health and care providers to compare services with other areas of Scotland and to track progress in improving the experiences of people using their services.

The survey supports three strategic objectives for both the Scottish Government and NHS Scotland – that care be safe, effective and person centred – by providing a basis for the measurement of quality as experienced by people across Scotland. The survey supports the person centred objective, which is focused on ensuring that care is responsive to people's individual preferences, needs and values. In addition, it supports the Chief Medical Officers vision that, by 2025, we will support the Health and Social Care workforce to practice Realistic Medicine, thereby enabling the delivery of high quality and personalised care to the people of Scotland.

The survey’s specific objectives are:

For local improvement:

• provide GP practices with structured feedback on people's experiences of their service, relative to other practices in Scotland and to previous results
• provide NHS Boards, Health & Social Care Partnerships and GP Clusters with information about people's experiences in their respective areas and variation within and between local areas

For national improvement:

• inform national planning and monitor performance
• identify variation within and between local areas, and if and how the level of positive and negative experiences have changed over time
• highlight areas of best practice and areas for improvement
• inform the Quality of Care Experience National Performance Framework indicator
• inform the NHS Scotland Local Delivery Plan standards on accessing GP services
• inform nine out of the twenty-three Health and Wellbeing Outcomes indicators under the Public Bodies (Joint Working) (Scotland) Act 2014

This survey is a means for Scottish Ministers to monitor how well they are fulfilling their duty, under Section 1 of the NHS (Scotland) Act 1978, to continue to promote a comprehensive and integrated health service that is designed to secure:

• improvement in the physical and mental health of the people of Scotland
• the prevention, diagnosis and treatment of illness, and for that purpose to provide or secure the effective provision of services in accordance with the 1978 Act

Lawful basis

We conduct this survey as a “public task in the public interest”. Our legal basis is that the use is necessary:

• for reasons of public interest in the area of public health
• for providing health or social care or treatment or managing health or social care systems and services
• for archiving, scientific or historical research, or statistical purposes

How we got your details

The Scottish Government applied to the Public Benefit and Privacy Panel (PBPP) for Health and Social Care in Scotland seeking approval to use the NHS database of patients registered with a General Practice to identify a survey sample and approach individuals. A copy of the approval letter from the PBPP is available online.

PHS selected people at random from all those who are registered with a GP Practice in Scotland, live at an address in Scotland and are aged 17 years and over.

Who has access to information that identifies you

Only specifically authorised personnel within PHS and IQVIA have access to the names and addresses of the individuals who are sent the survey.

IQVIA has only been given your name and address for the purpose of mailing you the survey and they are required to destroy this information once the survey work has been completed. They have signed a contract which stipulates this. They do not have access to any other information about you.

Staff at the NHS Central Register and PHS CHI Linkage and Indexing Service (who provide a service using information from the Community Health Index (CHI) database: a population register, which is used in Scotland for health care purposes) process some identifiable data on our behalf by running checks to reduce the risk of sending a survey pack to someone who has died.

Individual survey responses are tracked and stored using a unique survey ID number. Only specifically authorised analysts at PHS will retain a record of the identity of those who took part in the survey and this will be stored separately from the survey responses.

No access to your identity, including name and address, will be given to General Practices, NHS Boards, the Scottish Government or any other organisation or individual. The health and care professionals involved in your treatment or care will not know whether or not you took part in the survey.

All of the organisations involved in handling your name and address for the purpose of this survey adhere to the Information Sharing Toolkit Scotland. This brings together all of the statutory requirements, standards and best practice that apply to the handling of personal information, including requirements set out in Data Protection legislation. All transfers of personal or identifiable data are carried out securely.

How your survey responses are used

Access to your individual responses, held against the unique survey ID number, is very tightly controlled and is restricted to named individuals within PHS, the Scottish Government and IQVIA.

Before any analysis takes place, PHS analysts will use your postcode to identify where in Scotland you live. They will then link your survey responses to the area of Scotland you live in (so that we can compare responses from people living in different areas). PHS analysts will also link your survey responses to the General Practice you are registered with (so that we can produce reports about each General Practice) and to your age group and sex (so that we can check that responses are representative of the population). PHS analysts will not link your name and address to the survey responses. The survey responses will then be analysed by specifically authorised PHS and Scottish Government analysts who will produce national and local reports on the results, and carry out ad-hoc analyses. No individuals will be identifiable in the responses dataset or in the reported results. The reports will be published in spring 2024 on the Health and Care Experience survey website.

The information that will be linked to your survey responses and shared with analysts in the Scottish Government are:

• sex
• age group
• how deprived the area you live in is
• how urban or rural the area you live in is
• the General Practice you are registered with

The arrangements for protecting the confidentiality and privacy of individual information within the analysis are made in accordance with the Office for National Statistics Anonymisation and data confidentiality policy and PHS protocols.

The survey dataset, containing individual level survey responses but not including anything that identifies individuals, will sometimes be shared with a third party, such as a charity or academic researcher, for the purpose of undertaking additional analysis. Before any data are shared, the third party must seek the necessary approvals from the relevant NHS research, ethics and governance groups and sign a Data Processing Agreement or Data Sharing Agreement with the Scottish Government and PHS.

Sometimes survey responses are linked to other data sources in order to undertake other analyses. Linkage of survey responses can only be done by specifically authorised analysts working at PHS and is only done once the necessary approvals have been granted by the relevant NHS research, ethics and governance groups. All personnel involved with this additional analysis work in line with the standards set by the Information Sharing Toolkit.

How your additional comments are used

Additional comments made by respondents on the survey form are shared with Health and Care services for service improvement. All comments are anonymised before they are shared or analysed to ensure your identity is protected. 

This means that all personal details; all references to staff / patient / ward / unit names; and any other information which might allow an individual to be identified, such as specific conditions/treatments will be removed.

For example, if an individual had written “Doctor Smith was very nice”, this would be anonymised to “Doctor [name removed] was very nice”. Similarly, if an individual had written “I work as a male midwife on Trinity Ward”, this would be anonymised to “I work as a [job title removed] on Ward [name removed]”.

Anonymised additional comments from the survey will sometimes be shared with a third party, such as a charity or academic researcher, for the purpose of undertaking additional analysis. They will only be shared once appropriate approvals and governance are in place.

How long your information is stored for

All survey responses are stored securely and confidentially under the terms of Data Protection legislation.

IQVIA are required to destroy names and addresses once the survey work is complete. They will destroy paper copies of returned surveys once scanned copies are available and stored securely.

The survey dataset, containing individual level survey responses but not including anything that identifies individuals, will be stored by IQVIA for a period of six months and by the Scottish Government and PHS for as long as processing is necessary. This is to allow additional analysis to be carried out as required, for example time trends or more detailed analysis of particular aspects of the survey responses. This retention will be reviewed regularly to ensure that it is still appropriate to hold the data.

Scanned copies of completed questionnaires will be held by IQVIA for six months then destroyed.

A file containing personal identifiers and the respondents’ unique survey ID numbers will be stored by PHS for as long as processing is necessary. This file will be stored separately from the individual level survey responses. This file is retained to allow future data linkage with other data. This linkage would only be done where the necessary approvals have been granted by the relevant NHS research, ethics and governance groups.

Your rights

Taking part in the survey is voluntary. Completing the survey gives you an opportunity to provide feedback on your experience of health and care services in your local area. You don’t have to answer any question you don’t want to. You will be asked to skip questions that don’t apply to you.

None of the health or social care professionals involved in your care will know whether or not you have filled in this survey.

If you have received a survey form and do not wish to be contacted again, please contact the free survey helpline on 0800 783 1775 and request that you are not sent a reminder.

Data Protection legislation gives rights to individuals in respect of the personal data that organisations hold about them. These include:

• The right to be informed
• The right of access
• The right to rectification
• The right to erasure
• The right to restrict processing
• The right to data portability
• The right to object
• Rights in relation to automated decision making and profiling

The Information Commissioner’s Office provides more information on your rights under Data Protection legislation online.

Should you wish to contact the PHS data protection officer (DPO) in respect of your information rights, please read the main PHS Privacy Notice online and email the PHS DPO at phs.dataprotection@phs.scot

If you have contacted us and are still dissatisfied, you have the right to lodge a complaint with the Information Commissioners Office. You can find information on the data protection and personal information complaints tool online.

More information on privacy and confidentiality when using the NHS is available online. It also explains what you can do if you feel that your rights have not been respected.

How to contact us

Please contact us if you have any questions or concerns about our privacy policy or information we hold about you. You can contact us by emailing us at: patientexperience@gov.scot

More information about the Health and Care Experience survey is available online.