UK-REACH Privacy Policies

Here, you can find detailed information about the privacy notices for each sub-study of UK-REACH. These notices outline how participant data is collected, stored, and used, ensuring transparency and compliance with data protection regulations. Please review them to understand how your information is handled within each sub-study.


UK-REACH/I-CARE Longitudinal Cohort Research Study Privacy Notice

Information you need to know:

The University of Leicester’s Department of Respiratory Sciences is leading the UK Research Study into Ethnicity and COVID-19 Outcomes in Healthcare Workers (UK-REACH) and the Increasing retention of healthcare staff from ethnic minority groups (I-CARE) sub study investigating in which contexts and why are staff from minoritised groups more likely to leave or stay within NHS workforce post-pandemic compared to white British groups. This research study is a partnership of leading researchers and clinicians with national organisations including the General Medical Council (GMC), Nursing and Midwifery Council, Royal Colleges and ethnic minority healthcare worker associations. The I-CARE sub-study is co-led by University College London.

The University of Leicester is the Data Controller for your information. Further information about the University can be found here: www.le.ac.uk/

The University's Data Protection Officer is: Parmjit Singh Gill, Data Protection Officer and Commercial Lawyer, University Of Leicester, University Road, Leicester, LE1 7RH. Email: DPO@leicester.ac.uk

This privacy notice explains what information we are collecting, how we will use this information in this study and what rights participants have in relation to their information

What information are we collecting or using?

In UK-REACH I-CARE longitudnal cohort study we are collecting information from people who:
  • Previously consented to take part in the UK-REACH cohort study OR joined the register for your relevant healthcare profession since 1st January 2021 OR started working in a healthcare setting since 1st January 2021
  • AND; Are aged 16 and over and
  • Live and Work in the UK and
  • Are a healthcare worker or work in a healthcare setting; OR registered with the General Medical Council, Nursing and Midwifery Council, General Dental Council, Health and Care Professions Council, General Optical Council, General Pharmaceutical Council or the Pharmaceutical Society of Northern Ireland. (Note: You do not need to look after patients directly).

We will only collect and use your information if you have voluntarily agreed to participate in this study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

The information we will collect directly from you in the form of a questionnaire includes:

  • Your name, address and contact information including telephone/mobile numbers and email address.
  • age, sex, marital status and other background information including education
  • your work in healthcare, and your occupation and working life
  • special category information concerning your ethnicity, culture;
  • your home environment and living circumstances;
  • special category information concerning your physical and mental health;
  • your attitudes and values in life and at work;
  • information about your health;
  • your experience of events before and during the UK national lockdown

If you have consented for linkage to your health records we will also receive and use the following special category information provided by the NHS and other partners:

  • your routine NHS and GP records
  • any Covid-19 related records including positive tests and treatment, any test and trace records where you have signed up to these services

If you agree we will also :

  • Contact you about two further questionnaires over the next year in approximately 4 and 8 months' time.
  • Follow your health by extracting information from your past and future NHS health care records, any COVID-19 related records, and from COVID-19 symptom trackers and apps if you use them.
  • Contact you in the future to invite you to take part in additional studies.

Why are we collecting your data for this Research Study?

The main purpose of UK-REACH research study is to identify and understand if, how, and why, ethnicity affects clinical outcomes from COVID-19 in healthcare workers. In Work Package 2 we will specifically study healthcare workers and people who work in healthcare settings so that we can understand :

  • how social and work-related factors affect the risks of COVID-19 infection;
  • the impact on physical and mental health outcomes from COVID-19 among healthcare workers; and
  • how to help reduce differences in outcomes among healthcare workers from diverse ethnic groups.

The I-CARE study builds on the UK-REACH cohort study. The main purpose of the I-CARE study is to improve our understanding of the personal and work-related factors that are related to healthcare workers’ intentions to change or leave their jobs, and sickness absence. In particular, we wish to understand how these factors might differ for staff from minoritised groups (focusing on ethnicity and migration status), and to explore potential reasons for this.

Our purpose is also to carry out this research about healthcare workers over a long period so that this can be used to answer further research questions quickly to help improve clinical outcomes for healthcare workers in the long term. We will therefore continue to collect data about your health by extracting information from your past and future NHS routine health care records until 2045 if you have consented to this.

How we will use this data?

We will use your information to enable us to answer the main UK-REACH and I-CARE related research questions we have set out above.

We will do this in a way that protects your identity as follows:

  • Data managers from Leicester will separate out the personal identifiable information you supply (for e.g. name and contact information) from the questionnaire you completed and store these securely in separate places.
  • Your personally identifiable data will be sent to NHS Digital Health and Care Wales (DHSCW), who will pass it on to data owners in the NHS and request your NHS healthcare records. Personal identifiers will only be shared with the NHS in order to link your information to health records.
  • Your personally identifiable information will not leave the NHS but will be replaced with a code to ensure that all the information we need to collect about you can be linked to your questionnaire answers in a way that does not identify you. This is called pseudonymised information.
  • Pseudonymised information from your health records will be sent to our collaborator Swansea University who manage a secure trusted research information centre Secure eResearch Platform UK (SeRP UK). This will be done under our agreement with the UK Longitudinal Linkage Collaboration (UK-LLC) led by Bristol University. (The UK LLC is a collaboration of UK longitudinal studies, research universities, the NHS and UK statistical authorities operated by the University of Bristol.)
  • Your pseudonymised questionnaire data will separately be sent to SeRP UK where it will be encrypted with the DHSCW identifier.
  • Your pseudonymised health information will then be linked to your pseudonymised questionnaire information within SeRP UK’s secure data infrastructure. All other identifiable information such as geographic area and job title will be removed so that the information will become effectively anonymised for researchers, which means it is no longer possible to identify you from the information held. This information will be stored in the UK Longitudinal Linkage Collaboration (UK LLC)’s Trusted Research Environment (TRE) within SeRP UK.
  • All the data you have provided is fully de-identified before being deposited in the Trusted Research Environment – this does not contain participants name, any real world ID numbers (like NHS ID), address or full date of birth. The UK LLC does not include real world names of places people live or work, or the names or IDs of hospitals or other service providers.
  • UK-REACH and I-CARE Researchers from the University of Leicester and University College London (UCL) will only have access to this anonymised information and they will carry out their research within the UK LLC Trusted Research Environment within SeRP UK or, for questionnaire data not linked to medical records, within the secure research drives at the University.
  • Research analysis and outcome reports will be checked to ensure they are fully anonymised before they are allowed to leave the TRE.
  • Accredited researchers will be able to apply to access your de-identified linked-data within the UK LLC Trusted Research Environment.

The University has technical and organisational measures in place to ensure that the data used in this research is securely stored and only used for the purposes of this research. It also requires the other Universities who are collaborating with us in this study, and other partners who will provide, or process participant information to have their own technical and organisational measures in place to comply with Data Protection Legislation. We will not be using the data to record, learn or decide something about you.

Due to the nature of the study, there will be “profiling” of information including demographics, those who have medical conditions including Covid 19 outcomes and all participants who are in specific at-risk groups. This will allow us to be more precise in the way we study the impact of ethnicity and other demographic factors on the clinical and career outcomes in healthcare workers, in line with the purposes of the study.

The UK-REACH and I-CARE research study does not involve automated decision-making.

The UK LLC Privacy notice can be accessed here: Privacy Notice | UK Longitudinal Linkage Collaboration (ukllc.ac.uk)

What is the legal basis for processing the data?

The legal basis for the processing of participant information that we are collecting and using for the study is Public Task as set out in the Data Protection Act 2018 and GDPR Article 6.1(e). Research is a public task that the University of Leicester performs in the public interest, and is part of its core functions as a University.

Our additional legal basis for processing special category information are that:

  1. processing is ‘necessary for reasons of public interest in the area of public health’, as set out in the Data Protection Act 2018 and GDPR Article 9.2(i); or
  2. processing is necessary for ‘scientific research or statistical purposes’ in accordance with Article 89(1) as set out in the Data Protection Act 2018 and GDPR Article 9.2(j)

If we are sharing your data with others, who are we sharing it with?

This UK-REACH and I-CARE longitudinal cohort study involves research and delivery partners, such as other Universities, and other information processing operations. The following is a list of some of the organisations we are sharing participant information with, but is not an exhaustive list of all those who we may need to involve over the life of the study:

  • University College London who are part of the Consortium carrying out this research.
  • NHS Digital Health and Care Wales (DHSCW) who will receive identifiable participant information from Leicester and share this with NHS dataa owners, your NHS healthcare records.
  • Swansea University/SeRP UK who will provide the main data centre facilities for the duration of the WP2 study and will link all the pseudonymised health and questionnaire data together.
  • Bona Fide researchers outside the UK-REACH and I-CARE study team who successfully apply to UK LLC and/or a separate UK-REACH Committee set up to consider such applications. (Anonymised data only.)
  • Participant information may be required to be disclosed to regulatory authorities such as MHRA and public health agencies.
  • Only anonymised and summarised research reports will be shared with our Stakeholder partners representing the Healthcare professions and healthcare workers.

We are also required to provide progress reports and summarised research information to our grant funders and the Department of Health and Social Care but this will not include any information about individual participants.

We will only share with all these parties the minimum information that is necessary for them to undertake the task they are performing. We will not share information that identifies participants such as their name and contact information with people who do not need to know this.

Anonymised information means that a person can no longer be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long we will process your data for?

As UK-REACH is a longitudinal research study the information held by UK LLC SeRP UK Data centre will be retained for 25 years.

For other information held by Leicester as out below, unless otherwise stated, all the data held for this study will be deleted after 25 years.

  • Your consent to participate forms will be held for 25 years
  • The information you supplied in the questionnaires held by Leicester will be transferred to our Research File store and stored for 25 years.

What are your rights and how to enforce them?

Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them. For the purposes of research, where such individual rights would seriously impair research outcomes, such rights are limited.

In this UK-REACH and I-CARE research study, we need to limit participant’s rights and are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information for scientific research in accordance with GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.

Prior to applying these exemptions, we have carried out a Data Protection Impact Assessment and taken into account:

  • That this public health and scientific research is long term and is of national significance because it relates to;
  • That the results of our research will only be published in an anonymised or summarised basis;
  • We have taken appropriate measures to safeguard participant information we collect or receive and to protect the rights and freedoms of the patients whose information we will be using in our research by use of third parties who will remove the identifiable personal information from the linked data sets;
  • We and our partners are under an obligation to maintain confidentiality in our handling of identifiable and pseudonymised participants’ information;
  • We are making information about our research and use of their information available to participants and the public through this privacy notice which is available on this Study website.

We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health research purposes.

How will this affect the rights of participants?

Whilst participants involved in this research may withdraw from the study at any time they will not be able to exercise their rights to access their personal information, to request correction of inaccurate information or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. GDPR Articles 15,16,17,18 and 21 will not apply.

If you withdraw from the UK-REACH and I-CARE longitudinal cohort study at any stage, we will keep the information we have already obtained but, to safeguard your rights, we will use the minimum personally identifiable information possible.

What right do you have to complain to the Information Commissioner’s Office?

If you wish to ask questions about our use of this data or your rights, you may contact Information Assurance Services by email at ias@leicester.ac.uk or the University’s Data Protection Officer by email at DPO@leicester.ac.uk.

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk

UK-REACH I-CARE Research Study (Work Packages 4&5) Privacy Notice

Information you need to know:

The University of Leicester’s Department of Respiratory Sciences are conducting a study to understand why healthcare workers (HCWs) may wish to leave or change their jobs. In particular, we wish to focus on the experiences of healthcare staff from minoritised groups, especially in terms of ethnicity and migration status. We are calling this study I-CARE (Increasing retention of healthcare staff from ethnic minority groups) and it is a continuation of the UK-REACH study (United Kingdom Research study into Ethnicity And COVID-19 outcomes in healthcare workers) which started during the pandemic in 2020.

In Work Packages 4 and 5 the University of Oxford and University College London (UCL) are our collaborators in undertaking research.

The University of Leicester is the Data Controller for your information. Further information on the University can be found here: https://le.ac.uk/.

The University’s Data Protection Officer is: Parmjit Singh Gill, Data Protection Officer, University Of Leicester, University Road, Leicester, LE1 7RH. Email: DPO@leicester.ac.uk

This privacy notice explains what information we are collecting, how we will use this information in this study and what rights participants have in relation to their information

What information are we collecting or using?

We are collecting your personal information (name, email and phone number) as part of our registration process. This information will only be used for administrative purposes and not for research.

We will only collect and use your information if you have voluntarily agreed to participate in this study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

The information we will collect directly from you in the form of demographic questionnaire for WP4 includes:

  • Age
  • Gender
  • Ethnicity
  • Health Status
  • Job details
  • Nationality
  • Immigration Status
  • Working arrangements
  • Leaving intentions

The information we may document from your views expressed during interviews includes the following:

  • Your professional background, turnover intentions, turnover impact on your personal and professional life, and your views on staff retention. [For Healthcare Workers]
  • Your professional background, turnover intentions of staff, turnover impact on staff, patients and organisation, existing policies and actions on retention and your views on staff retention. [For Managers]

If you agree, we will also retain your contact details so that we can invite you to take part in additional studies.

Why are we collecting your data for this Research Study?

The aim of the I-CARE study is to improve our understanding of the personal and work-related factors that are related to healthcare workers’ intentions or actions to change or leave their jobs. In particular, we wish to understand how these factors might differ for staff from minoritised groups (focusing on ethnicity and migration status), and to explore potential reasons for this. The I-CARE study builds on the UK-REACH study. Our specific research questions are:

  • To improve our understanding of the personal and work-related factors that are related to healthcare workers’ intentions to change or leave their jobs, how these factors might differ for staff from minoritised groups, and to explore potential reasons for this.
  • To develop and refine a programme/system theory to improve understanding of how, why and in what contexts NHS policy interventions can improve the retention of NHS staff from minoritised groups post-pandemic.
  • To use the programme/system theory to co-design policy interventions to increase retention of NHS staff from minoritised groups, targeted at NHS trusts with low retention and average-to high proportions of staff from minoritised groups.

Participation will be anonymous and confidential

How we will use this data?

We will use your information to enable us to answer the main UK-REACH I-CARE related research questions for WP4&5 that we have set out above.

The safety and security of participants’ data is of the utmost importance to the study team. There will be strict mechanisms in place for data storage and access, and you will not be identifiable in research outputs. A small number of the research team will have access to your contact details to arrange, carry out and transcribe interview and make contact with you in the future if you have consented to this.

Your decision to participate will be confidential, and anything you say will also be confidential, and the information you give will be anonymised (so no personal data about you is shared). Your trust/employer will not be told that you have taken part in this research. In discussion with the Co-Principal Investigators and UK-REACH I-CARE Core Management Group, we may make information from the study, labelled only with unique codes, available to researchers approved by the UK-REACH I-CARE the Core Management Group. This information will not identify you and identifiable information will be kept separate from the data. Approved researchers will be required to adhere to strict data governance procedures detailed on the UK-REACH website www.uk-reach.org.

If you are taking part in the storytelling activity, you may be concerned that you could be identified from your audio story. It is not possible to completely eliminate this risk; however this risk will be very small. You can choose which parts of your story to tell, and which to leave out (you may wish to leave out anything you think could identify you). Your audio story resource will also be anonymised. This means that your name and any other identifying details about you will be changed (e.g. about your job, the place that you work or live, about your family, colleges and friends etc); and you can also choose to have your story voiced by a professional narrative practitioner if you wish. You will have the chance to work with the professional narrative practitioner to review your story and remove anything that you think might identify you. You will have the opportunity to approve the final story.

All the collaborating Universities have technical and organisational measures in place to ensure that the data used in this research is securely stored and only used for the purposes of this research.

Data collected during the study may be looked at by individuals from regulatory authorities, these bodies have their own technical and organisational measures in place to comply with Data Protection Legislation.

We will not be using the data to record, learn or decide something about you.

WP4 and 5 of the UK-REACH I-CARE research study does not involve automated decision-making.

What is the legal basis for processing the data?

The legal basis for the processing of participant information that we are collecting and using for the study is Public Task as set out in the Data Protection Act 2018 and GDPR Article 6.1(e). Research is a public task that the University of Leicester performs in the public interest, and is part of its core functions as a University.

Our additional legal basis for processing special category information is that:

  1. processing is ‘necessary for reasons of public interest in the area of public health’, as set out in the Data Protection Act 2018 and UK GDPR Article 9.2(i);

If we are sharing your data with others, who are sharing it with?

Access to transcripts or any files containing identifiable and/or potentially sensitive information will not be authorised beyond the research team comprising staff from the University and Leicester, UCL and University of Oxford.

We will be sharing the audio recording of interviews and focus groups with a third part for the purpose of enabling them to be transcribed. This will be covered by a contract including terms to protect your privacy.

  • Bona Fide researchers outside the UK-REACH and I-CARE study team who successfully apply to UK LLC and/or a separate UK-REACH Committee set up to consider such applications. (Anonymised data only.)
  • Participant information may be required to be disclosed to regulatory authorities such as MHRA and public health agencies.
  • Only anonymised and summarised research reports will be shared with our Stakeholder partners representing the Healthcare professions and healthcare workers.

Anonymised information means that a person can no longer be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long we will process your data for?

All the information being collected in WP4 and 5 will be held by the University and unless otherwise stated, the information will be held for and deleted after 6 years:

  • Your consent to participate forms;
  • Anonymised transcripts of audio recordings, held in our Research File Store
  • Audio recordings will be deleted as soon as they have been transcribed;
  • With permission, your identifiable personal information comprising your names and contact information will be retained by the University to enable us to invite you to participate in any future studies, otherwise we will delete it if you withdraw from the research or after 6 years whichever is the sooner.

What are your rights and how can you enforce them?

Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them. For the purposes of research, where such individual rights would seriously impair research outcomes, such rights are limited.

In this UK-REACH I-CARE WP4&5 research study, we need to limit participant’s rights and are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information for scientific research in accordance with GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.

Prior to applying these exemptions, we have carried out a Data Protection Impact Assessment and taken into account:

  • That this public health and scientific research is of national significance because it relates to NHS staff attrition which is crucial for effective service delivery and care of patients;
  • That the results of our research will only be published in an anonymised or summarised basis;
  • We have taken appropriate measures to safeguard participant information we collect or receive and to protect the rights and freedoms of the patients whose information we will be using in our research;
  • We and our partners are under an obligation to maintain confidentiality in our handling of identifiable and pseudonymised participants’ information;
  • We are making information about our research and use of their information available to participants and the public through this privacy notice which is available on this Study website and the University’s main website.

We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health and scientific research purposes.

How will this affect the rights of participants?

Whilst participants involved in this research may withdraw from the study at any time they will not be able to exercise their rights to access their personal information, to request correction of inaccurate information or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. GDPR Articles 15,16,17,18 and 21 will not apply.

If you withdraw from the project, we will keep the information we have already obtained but, to safeguard your rights, we will use the minimum personally identifiable information possible.

If you wish to ask questions about our research please contact Laura.Nellums@Nottingham.ac.uk

What right do you have to complain to the Information Commissioner’s Office?

If you wish to ask questions about our use of this data or your rights, you may contact Information Assurance Services by email at ias@leicester.ac.uk or the University’s Data Protection Officer by email at DPO@leicester.ac.uk

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk

UK-REACH Research Study (Work Package 2) Privacy Notice

Information you need to know:

The University of Leicester’s Department of Respiratory Sciences is leading the UK Research Study into Ethnicity and COVID-19 Outcomes in Healthcare Workers(UK-REACH). This research study is a partnership of leading researchers and clinicians with national organisations including the General Medical Council (GMC), Nursing and Midwifery Council, Royal Colleges and ethnic minority healthcare worker associations.

The University of Leicester is the Data Controller for your information. Further information about the University can be found here: www.le.ac.uk/

The University's Data Protection Officer is: Parmjit Singh Gill, Data Protection Officer and Commercial Lawyer, University Of Leicester, University Road, Leicester, LE1 7RH. Email: DPO@leicester.ac.uk

This privacy notice explains what information we are collecting, how we will use this information in this study and what rights participants have in relation to their information.

What information are we collecting or using?

In UK-REACH study Work Programme 2 (WP2) we are collecting information from people who are:
  • Are aged 16 and over and
  • Live and Work in the UK and
  • Are a healthcare worker or work in a healthcare setting(even if they do not look after patients directly; or
  • Are registered with the General Medical Council, Nursing and Midwifery Council, General Dental Council, Health and Care Professions Council, General Optical Council, General Pharmaceutical Council or the Pharmaceutical Society of Northern Ireland.

We will only collect and use your information if you have voluntarily agreed to participate in this study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

The information we will collect directly from you in the form of questionnaires for WP2 includes:

  • Your name, and contact information including telephone/mobile numbers and email address.
  • age, sex, marital status and other background information including education
  • your work in healthcare, and your occupation and working life
  • special category information concerning your ethnicity, culture, religion, languages;
  • your home environment and living circumstances;
  • special category information concerning your physical and mental health;
  • your attitudes and values in life and at work;
  • your possible exposure to COVID-19;
  • your experience of events before and during the UK national lockdown

We will also receive and use the following special category information provided by the NHS and other partners:

  • your routine NHS and GP records
  • any Covid-19 related records including positive tests and treatment, any test and trace records where you have signed up to these services

If you agree we will also :

  • Contact you about two further questionnaires over the next year in approximately 4 and 8 months' time.
  • Follow your health by extracting information from your past and future NHS health care records, any COVID-19 related records, and from COVID-19 symptom trackers and apps if you use them.
  • Contact you in the future to invite you to take part in additional studies

Why are we collecting your data for this Research Study?

As COVID-19 is a new disease, the main purpose of this UK-REACH research study is to identify and to understand if, how, and why, ethnicity affects clinical outcomes from COVID-19 in healthcare workers. In Work Package 2 we will specifically study healthcare workers and people who work in healthcare settings so that we can understand :

  • how social and work-related factors affect the risks of COVID-19 infection;
  • the impact on physical and mental health outcomes from COVID-19 among healthcare workers; and
  • how to help reduce differences in outcomes among healthcare workers from diverse ethnic groups.

Our purpose is also to carry out this research about healthcare workers over a long period so that this can be used to answer further research questions quickly to help improve clinical outcomes for healthcare workers in the long term. We will therefore continue to collect data about your health by extracting information from your past and future NHS routine health care records for 25 years.

How we will use this data?

We will use your information to enable us to answer the main UK-REACH related research questions we have set out above.

We will do this in a way that protects your identity as follows:

  • Data managers from Leicester will separate out the personal identifiable information you supply (for e.g. name and contact information) from the questionnaire you completed and store these securely in separate places.
  • Your personally identifiable data will be sent to NHS Digital Health and Care Wales (DHSCW), who will pass it on to data owners in the NHS and request your NHS healthcare records. Personal identifiers will only be shared with the NHS in order to link your information to health records.
  • Your personally identifiable information will not leave the NHS but will be replaced with a code to ensure that all the information we need to collect about you can be linked to your questionnaire answers in a way that does not identify you. This is called pseudonymised information.
  • Pseudonymised information from your health records will be sent to our collaborator Swansea University who manage a secure trusted research information centre SeRP UK. This will be done under our agreement with the UK Longitudinal Linkage Collaboration (UK-LLC) led by Bristol University. (The UK LLC is a collaboration of UK longitudinal studies, research universities, the NHS and UK statistical authorities operated by the University of Bristol.)
  • Your pseudonymised questionnaire data will separately be sent to Secure eResearch Platform UK (SeRP UK) where it will be encrypted with the DHSCW identifier.
  • Your pseudonymised health information will then be linked to your pseudonymised questionnaire information within SeRP UK’s secure data infrastructure. All other identifiable information such as geographic area and job title will be removed so that the information will become effectively anonymised for researchers, which means it is no longer possible to identify you from the information held. This information will be stored in the UK Longitudinal Linkage Collaboration (UK LLC)’s Trusted Research Environment (TRE) within SeRP UK.
  • All the data you have provided is fully de-identified before being deposited in the Trusted Research Environment – this does not contain participants name, any real world ID numbers (like NHS ID), address or full date of birth. The UK LLC does not include real world names of places people live or work, or the names or IDs of hospitals or other service providers.
  • UK-REACH Researchers from the University and University College London (UCL) will only have access to this anonymised information and they will carry out their research within the UK LLC Trusted Research Environment within SeRP UK.
  • Research analysis and outcome reports will be checked to ensure they are fully anonymised before they are allowed to leave the TRE.
  • Accredited researchers will be able to apply to access your de-identified linked-data within the UK LLC Trusted Research Environment.

The University has technical and organisational measures in place to ensure that the data used in this research is securely stored and only used for the purposes of this research. It also requires the other Universities who are collaborating with us in this study, and other partners who will provide, or process participant information to have their own technical and organisational measures in place to comply with Data Protection Legislation. We will not be using the data to record, learn or decide something about you.

Due to the nature of the study, there will be “profiling” of information including demographics, those who have medical conditions including Covid 19 outcomes and all participants who are in specific at-risk groups. This will allow us to be more precise in the way we study the impact of ethnicity on the clinical outcomes of COVID-19 on healthcare workers, in terms of the purposes of the study.

WP2 of the UK-REACH research study does not involve automated decision-making.

The UK LLC Privacy notice can be accessed here: Privacy Notice | UK Longitudinal Linkage Collaboration (ukllc.ac.uk)

What is the legal basis for processing the data?

The legal basis for the processing of participant information that we are collecting and using for the study is Public Task as set out in the Data Protection Act 2018 and GDPR Article 6.1(e). Research is a public task that the University of Leicester performs in the public interest, and is part of its core functions as a University.

Our additional legal basis for processing special category information are that:

  1. processing is ‘necessary for reasons of public interest in the area of public health’, specifically relating to COVID-19, as set out in the Data Protection Act 2018 and GDPR Article 9.2(i).
  2. processing is necessary for ‘scientific research or statistical purposes’ in accordance with Article 89(1) as set out in the Data Protection Act 2018 and GDPR Article 9.2(j)

If we are sharing your data with others, who are we sharing it with?

This UK-REACH WP2 study involves research and delivery partners, such as other Universities, and other information processing operations. The following is a list of some of the organisations we are sharing participant information with, but is not an exhaustive list of all those who we may need to involve over the life of the study:

  • University College London and Swansea University who are part of the Consortium carrying out this research analysis in WP2 study.
  • NHS Digital Health and Care Wales (DHSCW) who will receive identifiable participant information from Leicester and share this with NHS dataa owners, your NHS healthcare records.
  • Swansea University/SeRP UK who will provide the main data centre facilities for the duration of the WP2 study and will link all the pseudonymised health and questionnaire data together.
  • Bona Fide researchers outside the UK-REACH study team who successfully apply to UK LLC and/or a separate UK-REACH Committee set up to consider such applications
  • SAIL will provide the main data centre facilities for the duration of the study. They will receive information provided by DHCW, combine this with other administrative records and the information from the questionnaires, and create an anonymised data set for use by the research team.
  • Bona Fide researchers outside the UK-REACH study team who successfully apply to a separate Committee we will set up to consider such applications.
  • Participant information may be required to be disclosed to regulatory authorities and public health agencies.
  • Only anonymised and summarised research reports will be shared with our Stakeholder partners representing the Healthcare professions and healthcare workers.

We are also required to provide progress reports and summarised research information to our grant funders and the Department of Health and Social Care but this will not include any information about individual participants.

We will only share with all these parties the minimum information that is necessary for them to undertake the task they are performing. We will not share information that identifies participants such as their name and contact information with people who do not need to know this.

Anonymised information means that a person can no longer be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long we will process your data for?

As UK-REACH WP2 is a long COVID research study the information held by UK LLC SeRP UK Data centre will be retained for 25 years.

For other information held by Leicester as out below, unless otherwise stated, all the data held for this study will be deleted after 25 years.

  • Your consent to participate forms will be held for 25 years
  • The information you supplied in the questionnaires held by Leicester will be transferred to our Research File store after the third round of questionnaires have been completed and stored for 25 years.
  • If you have given us permission, we will retain your contact information, otherwise we will delete it if you withdraw from the research or after 25 years whichever is the sooner.

What are your rights and how to enforce them?

Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them. For the purposes of research, where such individual rights would seriously impair research outcomes, such rights are limited.

In this UK-REACH WP2 research study, we need to limit participant’s rights and are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information for scientific research in accordance with GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.

Prior to applying these exemptions, we have carried out a Data Protection Impact Assessment and taken into account:

  • That this public health and scientific research is long term and is of national significance because it relates to COVID -19, a new disease classed as a pandemic because it has affected people in many countries;
  • That the results of our research will only be published in an anonymised or summarised basis;
  • We have taken appropriate measures to safeguard participant information we collect or receive and to protect the rights and freedoms of the patients whose information we will be using in our research by use of third parties who will remove the identifiable personal information from the linked data sets;
  • We and our partners are under an obligation to maintain confidentiality in our handling of identifiable and pseudonymised participants’ information;
  • We are making information about our research and use of their information available to participants and the public through this privacy notice which is available on this Study website and the University’s main website.

We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health research purposes.

How will this affect the rights of participants?

Whilst participants involved in this research may withdraw from the study at any time they will not be able to exercise their rights to access their personal information, to request correction of inaccurate information or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. GDPR Articles 15,16,17,18 and 21 will not apply.

If you withdraw from the WP2 study at any stage, we will keep the information we have already obtained but, to safeguard your rights, we will use the minimum personally identifiable information possible.

What right do you have to complain to the Information Commissioner’s Office?

If you wish to ask questions about our use of this data or your rights, you may contact Information Assurance Services by email at ias@leicester.ac.uk or the University’s Data Protection Officer by email at DPO@leicester.ac.uk.

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk

UK-REACH Research Study (Work Package 4) Privacy Notice

Information you need to know:

The University of Nottingham, working in collaboration with Leicester’s Department of Respiratory Sciences, are conducting a UK Research Study into Ethnicity and COVID-19 Outcomes in Healthcare Workers. This research study is a partnership of leading researchers and clinicians with national organisations including the General Medical Council (GMC), Nursing and Midwifery Council, Royal Colleges and ethnic minority healthcare worker associations.

The University of Leicester is the Data Controller for your information. Further information on the University can be found here: https://le.ac.uk/.

The University’s Data Protection Officer is: Elisabeth Taoudi, Data Protection Officer and Commercial Lawyer, University Of Leicester, University Road, Leicester, LE1 7RH. Tel: 0116 229 7640. Email: et177@leicester.ac.uk.

This privacy notice explains what information we are collecting, how we will use this information in this study and what rights participants have in relation to their information.

What information are we collecting or using?

In UK-REACH study Work Package 4 (WP4) we are collection information from people who are:

  • Aged 16 and over and
  • Live and work in the UK and are
  • a healthcare worker in any healthcare setting (even if you do not look after patients directly). For WP4 we are seeking to recruit participants from diverse ethnic backgrounds including Black and ethnic minority backgrounds, as well as white ethnic backgrounds.

We will only collect and use your information if you have voluntarily agreed to participate in this study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

The information we will collect directly from you in registration, consent forms and in the form of demographic data template questionnaires for WP4 includes:

  • Your name, and contact information including your email address
  • Age
  • Gender
  • Country of birth
  • Years in the UK
  • Ethnicity
  • Job Role and location

The information we may document from your views expressed during interviews includes the following:

  • background information including education, your work in healthcare, and your occupation and working life.
  • special category information concerning your ethnicity, culture, religion, languages.
  • your attitudes and values in life and at work.
  • Your experience working in this role during COVID-19.
  • risk factors you or other healthcare workers like yourself have experienced during the pandemic.
  • workplace support you have received during the pandemic.

If you agree, we will also retain your contact details so that we can invite you to take part in additional studies.

Why are we collecting your data for this Research Study?

As COVID-19 is a new disease, the main purpose of this UK-REACH research study is to identify and to understand if, how, and why, ethnicity affects clinical outcomes from COVID-19 in healthcare workers in order to understand how participant’s life experiences (within and outside of healthcare settings) may shape their perspectives on risk factors, challenges, fears, or helpful resources during the COVID-19 pandemic.

In Work Package 4 we will conduct interviews and focus groups to gather experiences during COVID-19, including your views, challenges you have experienced, or things you perceive have put you or others at risk.

The aim of the interviews is to understand:

  • If, how, and why, ethnicity affects COVID-19 clinical outcomes in health workers (including clinical and non-clinical staff).
  • To gather reflections on participants’ views and experiences as clinical and non-clinical healthcare workers during the COVID-19 pandemic;
  • To explore what factors healthcare staff feel have put them or other healthcare staff at risk;
  • To examine fears or concerns healthcare staff have experienced both in and outside of work;
  • To discuss challenges healthcare staff have experienced in accessing the information they need for protecting themselves.

Participation will be anonymous and confidential

How we will use this data?

We will use your information to enable us to answer the main UK-REACH related research questions for WP4 we have set out above.

We will do this in a way that protects your identity as follows:

  • Data will be collected from interviews and focus groups. These will only be recorded with participants’ permission.
  • Where we have your permission to record, the recordings will be anonymised upon transcription, and analysed. Original recordings will be deleted once they have been transcribed.
  • Interviews and focus groups may be conducted with interpreters using simultaneous translation where preferred by the participants.
  • Where data is collected using interpreters, only the English language data will be transcribed and analysed.

If preferred, participants may also write their responses to the questions in the topic guide, rather than provide them orally.

Both the Universities of Leicester and Nottingham have technical and organisational measures in place to ensure that the data used in this research is securely stored and only used for the purposes of this research.

Individuals from regulatory authorities may look at data collected during the study; these bodies have their own technical and organisational measures in place to comply with Data Protection Legislation.

We will not be using the data to record, learn or decide something about you.

WP4 of the UK-REACH research study does not involve automated decision-making or profiling we will

What is the legal basis for processing the data?

The legal basis for the processing of participant information that we are collecting and using for the study is Public Task as set out in the Data Protection Act 2018 and GDPR Article 6.1(e). Research is a public task that the University of Leicester performs in the public interest, and is part of its core functions as a University.

Our additional legal basis for processing special category information is that processing is necessary:

  1. for reasons of public interest in the area of public health, specifically relating to COVID-19, as set out in the Data Protection Act 2018 and GDPR Article 9.2.i ; and
  2. for scientific research as set out in the Data Protection Act 2018 and GDPR Article 9.2.j.

If we are sharing your data with others, who are sharing it with?

Access to original transcripts or any files containing identifiable and/or potentially sensitive information will be limited to members of the research team comprising staff from the Universities of Leicester and Nottingham.

We will be sharing information with:

  • A third party enabling them to be transcribe and anonymise information from the audio recording of interviews and focus groups. We have a contract with the third party for these services that includes terms relating to confidentiality to protect your privacy.
  • Bona Fide researchers outside the UK-REACH study team who successfully apply to our UK-REACH access committee will only have access to anonymised research data.
  • Participant information may be required to be disclosed to regulatory authorities and public health agencies though most will only require anonymised information.
  • Direct access will be granted to authorised representatives from the University as sponsor, host institution, and the regulatory authorities to permit trial-related monitoring, audits and inspections.
  • Only anonymised and summarised research reports will be shared with our Stakeholder partners representing the Healthcare professions and healthcare workers.

We are also required to provide progress reports (including anonymised participant recruitment information) and summarised research information to our grant funders and the Department of Health and Social Care but this will not include any information about individual participants.

We will only share with all these parties the minimum information that is necessary for them to undertake the task they are performing. We will not share information that identifies participants such as their name and contact information with people who do not need to know this.

Anonymised information means that a person can no longer be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long we will process your data for?

All the information being collected in WP4 will be processed and unless otherwise stated, the information will be held for and deleted after 5 years:

  • Your consent to participate forms;
  • Anonymised transcripts of audio recordings, held in our Research File Store
  • Encrypted original audio recordings which will be deleted as soon as they have been transcribed;
  • With permission, your identifiable personal information comprising your names and contact information will be retained by the University to enable us to invite you to participate in any future studies, otherwise we will delete it if you withdraw from the research or after 5 years whichever is the sooner.

What are your rights and how can you enforce them?

Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them. For the purposes of research, where such individual rights would seriously impair research outcomes, such rights are limited.

In this UK-REACH WP4 research study, we need to limit participant’s rights and are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information for scientific research in accordance with GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.

Prior to applying these exemptions, we have carried out a Data Protection Impact Assessment and taken into account:

  • That this public health and scientific research is of national significance because it relates to COVID -19, a new disease classed as a pandemic because it has affected people in many countries;
  • That the results of our research will only be published in an anonymised or summarised basis;
  • We have taken appropriate measures to safeguard participant information we collect or receive and to protect the rights and freedoms of the patients whose information we will be using in our research by use of pseudonymisation and anonymisation techniques in respect of the identifiable personal information from the questionnaires and transcripts of interviews and focus groups;
  • We, our partners and data processors are under an obligation to maintain confidentiality in our handling of identifiable and pseudonymised participants’ information;
  • We are making information about our research and use of information available to participants and the public through this privacy notice which is available on the UK REACH Study website and the University of Leicester main website.

We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health and scientific research purposes.

How will this affect the rights of participants?

Whilst participants involved in this research may withdraw from the study at any time they will not be able to exercise their rights to access their personal information, to request correction of inaccurate information or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. GDPR Articles 15,16,17,18 and 21 will not apply.

If you withdraw from the project, we will keep the information we have already obtained but we will protect your rights in our research analysis since this will only involve processing information that has been pseudonymised or use of anonymised transcripts.

If you wish to ask questions about our research please contact Laura.Nellums@Nottingham.ac.uk

What right do you have to complain to the Information Commissioner’s Office?

If you have concerns or wish to complain about our use of this data in this research or your rights, please first contact Information Assurance Services by email at ias@leicester.ac.uk or the University’s Data Protection Officer by email at et177@leicester.ac.uk. In any communication, please provide the project title (“UK-REACH, Work Package 4”) and detail the nature of your concern or complaint.

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk

UK-REACH Research Study (Work Package 3) Privacy Notice

Information you need to know:

The University of Edinburgh, in conjunction with the University of Leicester’s Department of Respiratory Sciences are conducting a UK Research Study into Ethnicity and COVID-19 Outcomes in Healthcare Workers. This research study is a partnership of leading researchers and clinicians with national organisations including the General Medical Council (GMC), Nursing and Midwifery Council, Royal Colleges and ethnic minority healthcare worker associations.

The Universities of Edinburgh and Leicester are Joint Data Controllers for your information in Work package 3. Further information about Edinburgh can be found here: https://ed.ac.uk/ and about Leicester here: https://le.ac.uk/

Our Data Protection Officers are:

Edinburgh: Dr Rena Gertz. Email: Rena.Gertz@ed.ac.uk

Leicester: Elisabeth Taoudi, Data Protection Officer and Commercial Lawyer, University Of Leicester, University Road, Leicester, LE1 7RH. Tel: 0116 229 7640. Email: et177@leicester.ac.uk

This privacy notice explains what information we are collecting, how we will use this information in this study and what rights participants have in relation to their information

What information are we collecting or using?

In UK-REACH study Work Programme 3 (WP3) we are collecting information from people who are:

  • Are aged 16 or over and
  • Live and Work in the UK and
  • Key staff opinion leaders in healthcare and/or health research

We will only collect and use your information if you have voluntarily agreed to participate in this study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

The information we will collect directly from you in the consent form and the demographic data template questionnaires for WP3 includes:

  • Your name, and contact information include telephone/mobile numbers and email address
  • Age
  • Gender
  • Nationality
  • Ethnicity
  • Job Role and location

The information we may document from your views expressed during interviews includes the following:

  • background information including education, your work in healthcare, and your occupation and working life.
  • special category information concerning your ethnicity, culture, religion, languages;
  • your attitudes and values in life and at work;

If you agree, we will retain your contact information to enable us to invite you to take part in additional studies.

What information are we collecting or using?

As COVID-19 is a new disease, the main purpose of this UK-REACH research study is to identify and to understand if, how, and why, ethnicity affects clinical outcomes from COVID-19 in healthcare workers in order to inform response strategies to reduce COVID-19 morbidity and mortality, and poor mental health outcomes in these individuals.

In Work Package 3 we will conduct interviews to investigate the ethical and legal implications of linking professionals' registration data to healthcare data through interviews with participants.

The aim of the interviews is to understand the perceptions of health care workers around key concerns, such as:

  • The ethical and legal implications of using health datasets for research,
  • Current safeguards in law, policy and regulation,
  • Research participants' rights and interests,
  • How race and ethnicity may influence risks and stigmatisation.

Our purpose is to gather views on protection measures that can or should be put in place by law or policy (e.g. privacy protections, human rights, equality rights) to adequately protect research participants (and the broader community, both BAME and otherwise).

Participation will be anonymous and confidential.

How will we use this data?

We will use your information to enable us to answer the main UK-REACH related research questions we have set out above.

We will do this in a way that protects your identity as follows:

  • Data collected from questionnaires will not identify you by name(your name will be replaced with a unique research code).
  • Interviews will be only be audio recorded with participants’ permission.
  • Before being transcribed the audio recording file a participant’s name will be replaced with a pseudonym.
  • Once the transcription it received, it will be anonymised and once this is done the original audio recording will be deleted.

Both the University of Leicester and the University of Edinburgh have technical and organisational measures in place to ensure that the data used in this research is securely stored and only used for the purposes of this research.

We will not be using the data to record, learn or decide something about you.

WP3 of the UK-REACH research study does not involve automated decision-making or profiling.

What is the legal basis for processing the data?

The legal basis for the processing of participant information that we are collecting and using for the study is Public Task as set out in the Data Protection Act 2018 and GDPR Article 6.1(e). Research is a public task that the Universities of Leicester and Edinburgh perform in the public interest, and is part of their core functions as Universities.

Our additional legal basis for processing special category information is that processing is necessary for reasons of public interest in the area of public health, specifically relating to COVID- 19, as set out in the Data Protection Act 2018 and GDPR Article 9.2(i).

If we are sharing your data with others who are we sharing it with?

Only members of the UK research team for WP3 can access transcripts or any files containing identifiable and/or potentially sensitive information will not be authorised beyond the research team.

We will share information with:

  • Bona Fide researchers outside the UK-REACH study team who successfully apply to the access committee we will set up to consider such applications (which will include the Work Package 3 Co-Investigator for access requests specific to Work Package 3 data). Such access will only be provided to anonymised datasets.
  • Participant information may be required to be disclosed to regulatory authorities and public health agencies.
  • Direct access will be granted to authorised representatives from the University as sponsor, host institution, and the regulatory authorities to permit research related monitoring, audits and inspections.
  • Only anonymised and summarised research reports will be shared with our Stakeholder partners representing the Healthcare professions and healthcare workers.

We are also required to provide progress reports to our grant funders and the Department of Health and Social Care and because UK-REACH study is classed as Urgent Public Health Research this includes information about participant recruitment as well as summarised research information. However, this will not include any identifiable information about individual participants.

We will only share with all these parties the minimum information that is necessary for them to undertake the task they are performing. We will not share information that identifies participants such as their name and contact information with people who do not need to know this.

Anonymised information means that a person is cannot be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long will we process your data for?

Information processed the Universities of Leicester and Edinburgh is set out below, and unless otherwise stated, the information will be held for, and deleted after 5 years:

  • Your consent to participate forms.
  • Your questionnaire responses
  • Anonymised transcripts of audio recordings.
  • With permission, your personal identifiable data comprising names and contact information will be stored so we can contact you about other future studies, otherwise we will delete it if you withdraw from the research or after 5 years whichever is the sooner.
  • Original audio recordings will be deleted as soon as they have been transcribed.

What are your rights and how to enforce them?

Under Data Protection legislation, in addition to the right to be informed, as a participant you have the following rights in relation to the personal identifiable information we have collected and hold about you as part of this research study:

  • the right to access the information we hold about you;
  • the right to rectification - this allows you to ask us to correct inaccurate factual information we hold about you;
  • the right to erasure - this right is only available if you have first objected to our processing of the identifiable information we hold about you and that objection has been upheld; and
  • The right to object to processing.

If you withdraw from the project, we will keep the information we have already obtained but, to safeguard your rights, we will use the minimum personally identifiable information possible.

What right do you have to complain to the Information Commissioner’s Office?

If you have concerns or wish to complain about our use of your personal information in this research study please first contact Prof Niamh Nic Shuibhne, Director of Research, School of Law, University of Edinburgh: +44 (0)131 650 2049; niamh.nicshuibhne@ed.ac.uk. In your communication, please provide the project title (“UK-REACH, Work Package 3”) and detail the nature of your concern or complaint.

Alternatively contact one of our Data Protection Officers using the details supplied above or by email to Rena.Gertz@ed.ac.uk or to Elisabeth Taoudi et177@leicester.ac.uk

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk

Privacy Notice

UK-REACH Research Study –FOCUS GAMES (Work Package 8)

Information you need to know

The University of Leicester’s Department of Respiratory Sciences is leading the UK Research Study into Ethnicity and COVID-19 Outcomes in Healthcare Workers (UK- REACH). This research study is a partnership of leading researchers and clinicians with national organisations including the General Medical Council (GMC), Nursing and Midwifery Council, Royal Colleges and ethnic minority healthcare worker associations. The University of Leicester (Leicester) is the Sponsor for this research.

In this sub-study (this Study) we are collaborating with the University of Nottingham (Nottingham), University College London (UCL) and a third party company Focus Games Ltd., to develop and pilot test an online game designed to reduce Covid vaccine hesitancy in health care workers.

Leicester is the Data Controller for your information. Further information on the University can be found here: https://le.ac.uk/ .

The University’s Data Protection Officer is: Parmjit Singh Gill, University of Leicester, University Road, Leicester, LE1 7RH. Tel: 0116 229 7946 Email: dpo@leicester.ac.uk

This privacy notice explains what information we are collecting in this Study, how we will use this information in this study and what rights participants have in relation to their information.

What information are we collecting or using?

We will only collect and use your information if you have voluntarily agreed to participate in this study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

In UK-REACH study Work Package 8 (WP8) we are collecting information at different phases of the study as follows :

Co-development of game:
We will collect contact details of existing members of our Professional Expert Panel.

For the User Testing stage we will be collecting data from people who are:

  • Are aged 16 and over and
  • Live and work in the UK and
  • Are a healthcare worker or work in a healthcare setting (even if they do not look after patients directly); or
  • Are registered with the General Medical Council, Nursing and Midwifery Council, General Dental Council, Health and Care Professions Council, General Optical Council, General Pharmaceutical Council or the Pharmaceutical Society of Northern Ireland and

For the Pilot Study we are collecting information from people who are:

  • Are aged 16 and over and
  • Live and work in the UK and
  • Are a healthcare worker or work in a healthcare setting (even if they do not look after patients directly); or
  • Are registered with the General Medical Council, Nursing and Midwifery Council, General Dental Council, Health and Care Professions Council, General Optical Council, General Pharmaceutical Council or the Pharmaceutical Society of Northern Ireland, and
  • Are participants in the UK REACH study who have agreed that we may contact them to invite them to participate in further studies.

In respect of User Testing we will collect the following information from you:

  • age, sex and other background information including education
  • occupation
  • special category information concerning your ethnicity
  • your vaccination status
  • We will also collect your name and contact information including telephone/mobile numbers and email address in order to contact you for the interview and to provide you with a shopping voucher in return for your time.

In respect of the pilot study we will collect the following information from you:

  • age, sex and other background information including education
  • occupation
  • special category information concerning your ethnicity
  • Your vaccination status.

If you participate in interviews or wish to receive a gift voucher in return for your time we will use your name and contact information including telephone/mobile numbers and email address.

Why are we collecting your data for this Research Study?

The aim of the study is to determine if a low-cost online ‘serious’ game about SARS-CoV-2 is perceived to be acceptable and usable among Health Care Workers (HCWs) from diverse ethnic groups in the UK, and if it changes knowledge, attitudes, and reduces SARS-CoV-2 vaccine hesitancy.

In particular we want to:

  • assess the game’s uptake (number of people who play the game);
  • assess the game’s acceptability and usability among diverse HCWs (views of diverse HCWs towards the game);
  • establish if the game changes HCW knowledge and attitudes about SARS-CoV-2 vaccines;
  • explore the relationship between playing the game and uptake of booster SARS-CoV-2 vaccines in winter 2022.
  • provide evidence to support a funding application for further evaluation and roll-out of the game within the NHS.

User testing will help us to ensure that the game works and is well designed ready for the Pilot study.

How we will use this data?

We will use your information to enable us to answer the UK-REACH Work Package 8 research questions set out above.

We will do this in a way that protects your identity as follows:

In respect of Co-design:
Collaborator contact details will be stored in the trial master file on the University’s secure drive.

In respect of the User Testing:

  • One researcher from UCL will collect your name and contact information when you are recruited in order to contact you to carry out an interview and provide you with a voucher in return for your time.
  • You will be invited to take part in the Game. The link to the game will be embedded within the UK-REACH website, with the game content hosted and controlled by Focus Games Ltd. The maker of the game, Focus Games Ltd, will hold only the the data from the game session. This means they will not be able to identify you or know that you took part in the User testing.
  • One researcher from UCL will carry out an interview with you. This will be audio recorded, and then transcribed. After transcription is completed your contact details and the recording will be deleted. Only the anonymised transcript will be shared with other researchers so they will not be able to identify you or know that you took part in this Study.

In respect of the Pilot Study:

  • The link to the game will be embedded within the UK-REACH website, with the game content hosted and controlled by Focus Games Ltd. An anonymised token will be attached to the website URL, which can be collected by the game, in order to enable linkage between data held by UoL and the data held by Focus Games. The maker of the Game, Focus Games Ltd, will collect only the anonymous token and the data from the game session. This means they will not be able to identify you or know that you took part.
  • Game data will be shared with the University of Leicester via a secure file drop.
  • Data managers from Leicester will use the token to link the game data to your UK REACH ID (pseudonym) and obtain your vaccination status.
  • Data managers from Leicester will link the game data, vaccination status and the answers to any questionnaires and interviews you undertake for Work Package 8. The data will then be fully anonymised and stored separately from the rest of the UK REACH Data set before being shared with researchers from Leicester, Nottingham and UCL.
  • If you agree to be interviewed and/or wish to receive a shopping voucher in return for your time we will collect your name and contact information in order to contact you. This will be deleted at the end of the study.
  • If you are interviewed, one researcher from UCL will carry out the interview with you. This will be audio recorded, and then transcribed and then the recording deleted. Only the anonymised transcript will be shared with other researchers so they will not be able to identify you or know that you took part in this Study.

Leicester has technical and organisational measures in place to ensure that your data used in this research is securely stored and only used by those involved in the research for the purposes of this research. It also requires the other Universities who are collaborating with us and will process your personal information to have their own technical and organisational measures in place to comply with UK Data Protection Legislation.

We will not be using the data to record, learn or decide something about you.

No automated decision-making or profiling of individual is involved in this research Study.

What is the legal basis for processing your information?

The legal basis for the processing of your participant information that we are collecting and using for the study is performance of a task in the public interest (Public Task) as set out in the Data Protection Act 2018 and UK GDPR Article 6.1(e). Research is a public task that Leicester performs in the public interest, and is part of its core functions as a University.

Our additional legal basis for processing your special category information relating to health and ethnicity is that processing is necessary for reasons of public interest in the area of public health, specifically relating to COVID-19, as set out in the Data Protection Act 2018 and GDPR Article 9.2(i) and is necessary for scientific research as set out in the Data Protection Act 2018 and GDPR Article 9.2.j.

If we are sharing your data with others who are we sharing it with?

This UK-REACH WP8 study involves research and delivery partners, such as other Universities, and other information processing operations. The following is a list of the organisations we are sharing participant information with:

  • University College London who are carrying out recruitment for the User Testing stage, conducting interviews, and who are part of the Consortium carrying out this research analysis.
  • University of Nottingham who are part of the Consortium carrying out this research analysis.
  • Participant information may be required to be disclosed to regulatory authorities and public health agencies.

Only anonymised and summarised research reports will be shared with our Stakeholder partners representing the Healthcare professions and healthcare workers. We are also required to provide progress reports and summarised research information to our grant funders and the Department of Health and Social Care but this will not include any information about individual participants.

We will only share with all these parties the minimum information that is necessary for them to undertake the task they are performing. We will not share information that identifies participants such as their name and contact information with people who do not need to know this.

Anonymised information means that a person can no longer be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long we will process your data for?

Your information will be held for the duration of the Study, around 6 months. At the end of the study an anonymised research dataset will be transferred to the SAIL data centre for storage for ten years, then archived.

Audio recordings of interviews will be deleted after they have been transcribed. Interviewees’ contact details will be deleted once interviews have been transcribed and receipt of vouchers has been confirmed.

For other information held set out below, unless otherwise stated, the information will be held for and deleted after 25 years in line with the UK REACH main study:

  • Your consent to participate forms
  • Your withdrawal form should you wish to leave the study

What are your rights and how to enforce them?

Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them. For the purposes of research, where such individual rights would seriously impair research outcomes, such rights are limited.

In this UK-REACH WP8 research study, we need to limit participant’s rights and are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information for scientific research in accordance with GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.

Prior to applying these exemptions, we have carried out a Data Protection Impact Assessment for the study and taken into account:

  • That this public health and scientific research is of national significance because it relates to COVID -19, a new disease classed as a pandemic because it has affected people in many countries and UK healthcare workers from minority ethnic backgrounds in particular;
  • That the results of our research will only be published in an anonymised or summarised basis;
  • We have taken appropriate measures to safeguard participant information we collect or receive and to protect the rights and freedoms of the participants whose information we will be using in our research;
  • We and our partners are under an obligation to maintain confidentiality in our handling of identifiable and pseudonymised participants’ information;
  • We are making information about our research and use of their information available to participants and the public through this privacy notice which is available on the UK REACH'S website uk-reach.org

We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health research purposes.

How will this affect the rights of participants?

Whilst participants involved in this research may withdraw from the study at any time they will not be able to exercise their rights to access their personal information, to request correction of inaccurate information or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. GDPR Articles 15,16,17,18 and 21 will not apply.

If you withdraw from the project, we will keep the information we have already obtained but, to safeguard your rights, we will use the minimum personally identifiable information possible.

If you have any queries about this research please contact the UK-REACH study team using these contact details: uk-reach@leicester.ac.uk or 07425611865.

What right do you have to complain to the Information Commissioner’s Office?

If you wish to ask questions about our use of your data or your rights, you may contact Information Assurance Services by email at ias@leicester.ac.uk or the University’s Data Protection Officer by email at dpo@leicester.ac.uk .

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk

REACH-OUT Qualitative Study Privacy Notice – Healthcare workers

Information you need to know:

The University of Leicester’s Department of Respiratory Sciences, are conducting this REACH OUT research study which is funded by the NHS Race and Health Observatory. REACH OUT is a sub-study of the UKRI-DHSC/NIHR-funded research project called “UK-REACH: United Kingdom Research Study into Ethnicity And COVID-19 outcomes in Healthcare workers”. The UK REACH research study is a partnership of leading researchers and clinicians with national organisations including the General Medical Council (GMC), Nursing and Midwifery Council, Royal Colleges and ethnic minority healthcare worker associations.

Leicester is the Data Controller for your information. Further information on the University can be found here: https://le.ac.uk/.

The University’s Data Protection Officer is: Parmjit Singh Gill, University of Leicester, University Road, Leicester, LE1 7RH. Tel: 0116 229 7946 Email: dpo@leicester.ac.uk

This privacy notice explains what information we are collecting, how we will use this information in this REACH OUT Qualitative study and what rights participants have in relation to their information.

What information are we collecting or using?

In this REACH-OUT qualitative study, we are collecting information from existing UK REACH participants (WP2 and WP4) who consented to be contacted about future studies and who are:

  • Aged 16 or over and
  • Live and work in the UK and
  • A healthcare worker in any healthcare setting (even if you do not look after patients directly) who have had COVID-19 (with or without persistent symptoms) and
  • from diverse ethnic backgrounds including Black and ethnic minority backgrounds, as well as white ethnic backgrounds.

We will only collect and use your information if you have voluntarily agreed to participate in this REACH OUT qualitative study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

The information we will collect directly from you in registration, consent forms and in the form of demographic data template questionnaires for this qualitative study includes:

  • Your name and your contact information, including your email address and phone number
  • Age
  • Gender
  • Country of Birth
  • Years in the UK
  • Ethnicity
  • Job Role and Location
  • If you have or have had long COVID
  • If you have had any COVID-19 Vaccinations

The information we may document from your views expressed during interviews includes the following:

  • Background information including education, your work in healthcare, and your occupation and working life.
  • Experiences of acute COVID-19 infection/long COVID
  • Post-COVID-19/long COVID stigma
  • Your attitudes to, and impact of Covid 19 and long Covid on life and at work.
  • Your experience working in this role post- COVID-19.
  • Risk factors you or other healthcare workers like yourself have experienced post-COVID-19
  • Workplace support you have received post Covid 19.

We will retain your contact details so that we can invite you to take part in a second interview this year.

Why are we collecting your data for this Research Study?

As COVID-19 is a new disease, and there is so much we don’t know about long Covid the main purpose of this REACH-OUT research study is to estimate the prevalence of long COVID among healthcare workers, characterise the syndrome, and understand the impacts of medium-term and post-acute/long COVID illness on the mental, physical, and occupational health of diverse communities of HCWs in the UK, and their work and home lives.

In this particular qualitative study we will carry out one- to –one interviews to enable us to investigate the experiences of HCWs from diverse ethnic backgrounds who have had COVID-19, including long COVID, and the impact on their physical and mental health, work, and wider community and things they perceive have put them or others at risk.

The aim of this study is to understand:

  • HCWs’ experiences of acute infection (initial COVID-19 illness);
  • Whether participants have experienced any persistent symptoms/long COVID, and what these symptoms have been like over time;
  • The impact of acute and long COVID on mental and physical health, their work life, provision of care, and their home lives.
  • Their unmet needs, coping strategies, sources of support, healthcare seeking and experiences of healthcare, and response of their employer.

How will we use this data?

We will use your information to enable us to answer the main REACH-OUT related research questions for this study we have set out above.

We will do this in a way that protects your identity as follows:

  • Data will be collected from interviews. These will only be recorded with participants’ permission.
  • Where we have your permission to record, the recordings will be anonymised upon transcription, and before being analysed. Original recordings will be deleted once they have been transcribed and checked.
  • Interviews may be conducted with interpreters using simultaneous translation where preferred by the participants.
  • Where data is collected using interpreters, only the English language data will be transcribed and analysed.

The University of Leicester and our collaborators at University of Nottingham and University College London have technical and organisational measures in place to ensure that the data used in this research is securely stored and only used for the purposes of this research.

Individuals from regulatory authorities may look at data collected during the study; these bodies have their own technical and organisational measures in place to comply with Data Protection Legislation.

We will not be using the data to record, learn or decide something about you.

This research study does not involve automated decision-making or profiling. we will

What is the legal basis for processing the data???

The legal basis for the processing of participant information that we are collecting and using for the study is that processing is necessary for the performance of a task carried out in the public interest (Public Task) as set out in the Data Protection Act 2018 and GDPR Article 6.1(e). Research is a task that the University of Leicester performs in the public interest, and is part of its core functions as a university.

Our additional legal basis for processing special category information is that processing is necessary:

  1. for reasons of public interest in the area of public health, specifically relating to the impact of COVID-19 and long Covid on Health Care workers, as set out in the Data Protection Act 2018 and GDPR Article 9.2.i ; and
  2. for archiving in the public interest and scientific research as set out in the Data Protection Act 2018 and GDPR Article 9.2.j.

If we are sharing your data with others, who are we sharing it with?

Access to original transcripts or any files containing identifiable and/or potentially sensitive information will be limited to members of the research team comprising staff from the University of Leicester and the transcriber.

  • A third party enabling them to be transcribe and anonymise information from the audio recording of interviews. We have a contract with the third party for these services that includes terms relating to confidentiality to protect your privacy.
  • Our Research collaborators from the University of Nottingham and University College London
  • Bona Fide researchers outside the REACH OUT study team who successfully apply to our UK-REACH access committee will only have access to anonymised research data.
  • Participant information may be required to be disclosed to regulatory authorities and public health agencies though most will only require anonymised information.
  • Direct access will be granted to authorised representatives from the University of Leicester as sponsor, host institution, and the regulatory authorities to permit audits and inspections.
  • Only anonymised and summarised research reports will be shared with our UK REACH Stakeholder partners representing the Healthcare professions and healthcare workers.

We are also required to provide progress reports (including anonymised participant recruitment information) and summarised research information to our grant funders but this will not include any information about individual participants.

We will only share with all these parties the minimum information that is necessary for them to undertake the task they are performing. We will not share information that identifies participants such as their name and contact information with people who do not need to know this.

Anonymised information means that a person can no longer be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long we will process your data for?

As this sub -study is part of the 25 years Long term UK REACH study all the personally identifiable information being collected in this qualitative study will be processed and unless otherwise stated, the information will be held for and deleted after 25 years:

  • Your consent to participate forms;
  • Anonymised transcripts of audio recordings, held in our Research File store will be deleted after 5 years;
  • Encrypted original audio recordings will be deleted as soon as they have been transcribed and checked;

What are your rights and how can you enforce them?

Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them including the right to access, to rectification, to erasure, to restrict or object to processing. However, in this REACH OUT qualitative research study these rights are limited in respect of this research in the following circumstances:

  1. Because our research is being carried out as a public task in the public interest under Art 6.2.e and also for reasons of public interest in public health under Art 9.2.i the rights to erasure and to object to processing do not apply.
  2. in respect of special category data because it is being processed for archiving in the public interest and scientific research under Art 9.2.j and we consider individual rights would seriously impair research outcomes, these rights are limited. We are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information in accordance with UK GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.

Prior to applying the exception in 1) and the exemptions in 2) above, we have carried out a Data Protection Impact Assessment and taken into account:

  • That this public health related research sub-study is part of the long term UK REACH study and is of national significance because it relates to COVID -19, a new disease classed as a pandemic and also to long COVID;
  • That this research is of public interest because of the impact of COVID 19 and long Covid on the healthcare worker sector.
  • That the results of our research will only be published in an anonymised or summarised basis;
  • We have taken appropriate measures to safeguard participant information we collect or receive and to protect the rights and freedoms of the patients whose information we will be using in our research;
  • We and our partners are under an obligation to maintain confidentiality in our handling of participants’ information;
  • We are making information about our research and use of their information available to participants and the public through this privacy notice which is available on the UK REACH Study website and the University’s main website.

We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health related research purposes.

How will this affect the rights of participants?

Participants involved in this research will not be able to exercise their rights to access their personal information, to request correction of inaccurate information (where they cannot do this themselves) or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. UK GDPR Articles 15,16,17,18 and 21 will not apply.

If you withdraw from the REACH OUT sub-study, we will keep the information we have already obtained but we will protect your rights in our research analysis since this will only involve processing information that has been pseudonymised or use of anonymised transcripts.

If you wish to ask questions about our research, please contact the research team by email to uk-reach@leicester.ac.uk. In any communication, please provide the project title (“REACH-OUT, Qualitative study”).

What right do you have to complain to the Information Commissioner’s Office?

If you wish to ask questions about our use of your data or your rights, you may contact Information Assurance Services by email at ias@leicester.ac.uk or the University’s Data Protection Officer by email at dpo@leicester.ac.uk .

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk

REACH-OUT Qualitative Study Privacy Notice – Healthcare workers

Information you need to know:

The University of Leicester’s Department of Respiratory Sciences, are conducting this REACH OUT research study which is funded by the NHS Race and Health Observatory. REACH OUT is a sub-study of the UKRI-DHSC/NIHR-funded research project called “UK-REACH: United Kingdom Research Study into Ethnicity And COVID-19 outcomes in Healthcare workers”. The UK REACH research study is a partnership of leading researchers and clinicians with national organisations including the General Medical Council (GMC), Nursing and Midwifery Council, Royal Colleges and ethnic minority healthcare worker associations.

Leicester is the Data Controller for your information. Further information on the University can be found here: https://le.ac.uk/.

The University’s Data Protection Officer is: Parmjit Singh Gill, University of Leicester, University Road, Leicester, LE1 7RH. Tel: 0116 229 7946 Email: dpo@leicester.ac.uk

This privacy notice explains what information we are collecting, how we will use this information in this REACH OUT Qualitative study and what rights participants have in relation to their information.

What information are we collecting or using?

In this REACH-OUT qualitative study, we are collecting information from existing UK REACH participants (WP2 and WP4) who consented to be contacted about future studies and who are:

  • Aged 16 or over and
  • Live and work in the UK and
  • A healthcare worker in any healthcare setting (even if you do not look after patients directly) who have had COVID-19 (with or without persistent symptoms) and
  • from diverse ethnic backgrounds including Black and ethnic minority backgrounds, as well as white ethnic backgrounds.

We will only collect and use your information if you have voluntarily agreed to participate in this REACH OUT qualitative study and have completed participant consent forms in accordance with ethical requirements and to meet legal obligations relating to confidentiality.

The information we will collect directly from you in registration, consent forms and in the form of demographic data template questionnaires for this qualitative study includes:

  • Your name and your contact information, including your email address and phone number
  • Age
  • Gender
  • Country of Birth
  • Years in the UK
  • Ethnicity
  • Job Role and Location
  • If you have or have had long COVID
  • If you have had any COVID-19 Vaccinations

The information we may document from your views expressed during interviews includes the following:

  • Background information including education, your work in healthcare, and your occupation and working life.
  • Experiences of acute COVID-19 infection/long COVID
  • Post-COVID-19/long COVID stigma
  • Your attitudes to, and impact of Covid 19 and long Covid on life and at work.
  • Your experience working in this role post- COVID-19.
  • Risk factors you or other healthcare workers like yourself have experienced post-COVID-19
  • Workplace support you have received post Covid 19.

We will retain your contact details so that we can invite you to take part in a second interview this year.

Why are we collecting your data for this Research Study?

As COVID-19 is a new disease, and there is so much we don’t know about long Covid the main purpose of this REACH-OUT research study is to estimate the prevalence of long COVID among healthcare workers, characterise the syndrome, and understand the impacts of medium-term and post-acute/long COVID illness on the mental, physical, and occupational health of diverse communities of HCWs in the UK, and their work and home lives.

In this particular qualitative study we will carry out one- to –one interviews to enable us to investigate the experiences of HCWs from diverse ethnic backgrounds who have had COVID-19, including long COVID, and the impact on their physical and mental health, work, and wider community and things they perceive have put them or others at risk.

The aim of this study is to understand:

  • HCWs’ experiences of acute infection (initial COVID-19 illness);
  • Whether participants have experienced any persistent symptoms/long COVID, and what these symptoms have been like over time;
  • The impact of acute and long COVID on mental and physical health, their work life, provision of care, and their home lives.
  • Their unmet needs, coping strategies, sources of support, healthcare seeking and experiences of healthcare, and response of their employer.

How will we use this data?

We will use your information to enable us to answer the main REACH-OUT related research questions for this study we have set out above.

We will do this in a way that protects your identity as follows:

  • Data will be collected from interviews. These will only be recorded with participants’ permission.
  • Where we have your permission to record, the recordings will be anonymised upon transcription, and before being analysed. Original recordings will be deleted once they have been transcribed and checked.
  • Interviews may be conducted with interpreters using simultaneous translation where preferred by the participants.
  • Where data is collected using interpreters, only the English language data will be transcribed and analysed.

The University of Leicester and our collaborators at University of Nottingham and University College London have technical and organisational measures in place to ensure that the data used in this research is securely stored and only used for the purposes of this research.

Individuals from regulatory authorities may look at data collected during the study; these bodies have their own technical and organisational measures in place to comply with Data Protection Legislation.

We will not be using the data to record, learn or decide something about you.

This research study does not involve automated decision-making or profiling. we will

What is the legal basis for processing the data???

The legal basis for the processing of participant information that we are collecting and using for the study is that processing is necessary for the performance of a task carried out in the public interest (Public Task) as set out in the Data Protection Act 2018 and GDPR Article 6.1(e). Research is a task that the University of Leicester performs in the public interest, and is part of its core functions as a university.

Our additional legal basis for processing special category information is that processing is necessary:

  1. for reasons of public interest in the area of public health, specifically relating to the impact of COVID-19 and long Covid on Health Care workers, as set out in the Data Protection Act 2018 and GDPR Article 9.2.i ; and
  2. for archiving in the public interest and scientific research as set out in the Data Protection Act 2018 and GDPR Article 9.2.j.

If we are sharing your data with others, who are we sharing it with?

Access to original transcripts or any files containing identifiable and/or potentially sensitive information will be limited to members of the research team comprising staff from the University of Leicester and the transcriber.

  • A third party enabling them to be transcribe and anonymise information from the audio recording of interviews. We have a contract with the third party for these services that includes terms relating to confidentiality to protect your privacy.
  • Our Research collaborators from the University of Nottingham and University College London
  • Bona Fide researchers outside the REACH OUT study team who successfully apply to our UK-REACH access committee will only have access to anonymised research data.
  • Participant information may be required to be disclosed to regulatory authorities and public health agencies though most will only require anonymised information.
  • Direct access will be granted to authorised representatives from the University of Leicester as sponsor, host institution, and the regulatory authorities to permit audits and inspections.
  • Only anonymised and summarised research reports will be shared with our UK REACH Stakeholder partners representing the Healthcare professions and healthcare workers.

We are also required to provide progress reports (including anonymised participant recruitment information) and summarised research information to our grant funders but this will not include any information about individual participants.

We will only share with all these parties the minimum information that is necessary for them to undertake the task they are performing. We will not share information that identifies participants such as their name and contact information with people who do not need to know this.

Anonymised information means that a person can no longer be identified from the information and it is not personal information for the purposes of Data Protection Legislation.

How long we will process your data for?

As this sub -study is part of the 25 years Long term UK REACH study all the personally identifiable information being collected in this qualitative study will be processed and unless otherwise stated, the information will be held for and deleted after 25 years:

  • Your consent to participate forms;
  • Anonymised transcripts of audio recordings, held in our Research File store will be deleted after 5 years;
  • Encrypted original audio recordings will be deleted as soon as they have been transcribed and checked;

What are your rights and how can you enforce them?

Under Data Protection legislation, individuals normally have rights in relation to the personal information we hold about them including the right to access, to rectification, to erasure, to restrict or object to processing. However, in this REACH OUT qualitative research study these rights are limited in respect of this research in the following circumstances:

  1. Because our research is being carried out as a public task in the public interest under Art 6.2.e and also for reasons of public interest in public health under Art 9.2.i the rights to erasure and to object to processing do not apply.
  2. in respect of special category data because it is being processed for archiving in the public interest and scientific research under Art 9.2.j and we consider individual rights would seriously impair research outcomes, these rights are limited. We are relying on the exemptions in Schedule 2 Part 6 paragraph 27 of the Data Protection Act 2018 because we are processing this information in accordance with UK GDPR Art. 89(1) and Approved Medical Research covered by s19 Data Protection Act 2018.

Prior to applying the exception in 1) and the exemptions in 2) above, we have carried out a Data Protection Impact Assessment and taken into account:

  • That this public health related research sub-study is part of the long term UK REACH study and is of national significance because it relates to COVID -19, a new disease classed as a pandemic and also to long COVID;
  • That this research is of public interest because of the impact of COVID 19 and long Covid on the healthcare worker sector.
  • That the results of our research will only be published in an anonymised or summarised basis;
  • We have taken appropriate measures to safeguard participant information we collect or receive and to protect the rights and freedoms of the patients whose information we will be using in our research;
  • We and our partners are under an obligation to maintain confidentiality in our handling of participants’ information;
  • We are making information about our research and use of their information available to participants and the public through this privacy notice which is available on the UK REACH Study website and the University’s main website.

We have concluded that the exercise of rights by participants would seriously impair the achievement of the Study objectives and the exemptions are necessary to enable us to fulfil our public health related research purposes.

How will this affect the rights of participants?

Participants involved in this research will not be able to exercise their rights to access their personal information, to request correction of inaccurate information (where they cannot do this themselves) or erasure of their information, to restrict processing of information or to object to our processing of their information even if they leave the study. UK GDPR Articles 15,16,17,18 and 21 will not apply.

If you withdraw from the REACH OUT sub-study, we will keep the information we have already obtained but we will protect your rights in our research analysis since this will only involve processing information that has been pseudonymised or use of anonymised transcripts.

If you wish to ask questions about our research, please contact the research team by email to uk-reach@leicester.ac.uk. In any communication, please provide the project title (“REACH-OUT, Qualitative study”).

What right do you have to complain to the Information Commissioner’s Office?

If you wish to ask questions about our use of your data or your rights, you may contact Information Assurance Services by email at ias@leicester.ac.uk or the University’s Data Protection Officer by email at dpo@leicester.ac.uk .

Anyone can raise concerns about how their information has been processed with the Information Commissioner’s Office (ICO).

The ICO may be contacted:

By Post addressed to: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

By telephone: 0303 123 1113.

By Email: contact can be made by accessing www.ico.org.uk