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Data processing FAQ

Q: How did phase 12 go?

Q: What clinical results do we provide?

Q: What happens if I withdraw from the study?

Q: How are my blood samples stored?

Q: DNA testing

Q: How is my personal information kept confidential?

Q: Can I be identified from the research data?

Q: Linkage with electronic health records

Q: Do you share research data?

Q: Any more questions?

How did Phase 12 go?

We are pleased to inform you that the 12th wave of data collection was completed at the end of 2016.

Following requests from many of you, this phase was based at several clinics throughout the UK: London, Bristol, Birmingham and Liverpool. Each clinic was open for a set period during 2015-2016. We hope that this made the journey to us more manageable. Home visits were also available for those who were unable to travel a clinic. Some key documents were:

The data have been curated and checked and are now being used for research. A total of 5,632 participants either attended the study’s London or regional clinics, were examined at home, or responded via questionnaire or telephone interview.

The participation rate was again very high, involving 80% of those in the study. Many thanks to all of you – this smooth research collaboration is unique, we feel really privileged to work with you.

Our measures and procedures are approved by the London-Harrow Research Ethics Committee, REC Ref 85/0938.

What clinical results do we provide?

After your clinical examination you should have received a letter with the following results enclosed:

· Blood sugar levels

· Cholesterol

· Weight

· Body mass index (BMI)

· Waist measurement

· Blood pressure (BP)

· Electrocardiogram (ECG)

· Kidney functioning (eGFR)

These are the results that the NHS provides guidelines for. If there were any abnormal results you should discuss them with your GP. 

What happens if I withdraw from the study?

It has been our policy from the beginning that, as a volunteer, you have the right to withdraw completely from the study at any stage without giving us any reason.

If you withdraw, we will not contact you to participate at any future phases. The research information you supplied voluntarily at previous study phases is retained in a pseudo-anonymised form (that is, without your personal identifiers) in the research database. This enables us to continue our research into stress and health and about how previous and current circumstances affect health and quality of life in an ageing cohort.

If you wish to withdraw from the study please contact us on:

· Freephone:  0800 068 1562 

· Email: whitehall2@ucl.ac.uk

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 How are my blood samples stored?

The blood samples you have provided are stored and used in accordance with the UK Human Tissue Act 2004 and the Codes of Practice laid down by the Human Tissue Authority (HTA), who regulate the storage and use of human tissues or cells for research, amongst other things.

The samples are stored in our UCL secure freezer store. We store samples of your blood to look at changes over time, studying the causes of heart and circulatory disease and possible ways of preventing it.

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DNA testing

We have only collected a blood sample for DNA testing from you if we do not already have a sample in storage from a previous phase or the sample we have in storage is running low.

When you provide us with a DNA sample, it is stored and used for the study of genetic influences which may be relevant to diabetes, heart disease, stroke and cognitive function.

We will continue to use any DNA samples provided previously for the study of genetic influences. Should you no longer wish us to do so, please inform us in writing and these samples will be destroyed.

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How is my personal information kept confidential?

All data collected by the Stress & Health Study are securely managed in accordance with the provisions of the Data Protection Act (1998) and the NHS Information Governance requirements.

Your personal details and health data are stored securely in our restricted-access computer network and lockable cabinets, and are exclusively handled by the specially trained support team. Researchers do not have access to this level of information.

Your personal data are only used for contact purposes, so that we can invite you to future data collections, send you your clinical results or any other correspondence such as newsletters. In addition, we supply some of these identifiable fields to NHS Digital to perform the linkage with external health records needed for research purposes. See Linkage with electronic health records for more information.

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Can I be identified from the research data?

Your data will not identify any particular individual by the time they reach the hands of the researchers. Before research can be done, all of the information we have collected is processed to generate analysable research data, and any personal identifiers (such as name, contact details, detailed health diagnosis and dates, etc) are removed. Each participant is simply identified with a numeric ID. The resulting research data are analysed at group level for health-related research purposes only.

The risk of inadvertent identification of participants by researchers is very small but not completely inexistent, so it is compulsory that researchers enter a legal agreement not to make any attempt to identify participants before they use the data and samples. All data users must be scientists with an established record who conduct high quality, ethical research, that they adhere to our information governance policies and practices, and that they access the data from secure storage systems.

No individual can be identified in the reports and articles published from our studies, as the data published only contain summary tables with a very low level of detail.

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Linkage with electronic health records

In addition to the collection of questionnaire and clinical data, a crucial aspect of the study is the identification and verification of illnesses and health status, even after incapacity or death. This is achieved by securely linking with electronic health data such as cancer and death registrations, hospital records and mental health data. The linkage has been approved by NHS Digital under a very robust and highly safe system of provision of health data for research purposes.

The data linkage process is currently managed by the new NHS IT provider called NHS Digital. They have established a robust system for provision of health data for research purposes. This system involves a very strict application process, secure data linkage procedures and data release.

NHS Digital requires an adequate legal basis for cohort linkage (Section 251), high levels of data safeguarding and proof of the excellence of research project. In 2015 we successfully obtained NHS Digital permission to receive the following external electronic health records for the Whitehall II participants:

· ONS death certificates, which stem from the civil registry data maintained by the UK General Register Office

· Cancer Registrations, provided to NHS Digital by Public Health England

· Hospital records and mental health data, provided by NHS Digital

The linkage with these data is done by NHS digital using the details of our participants (NHS number, name, DOB, sex, postcode), which we upload onto their IT server in a highly secure manner. After the linkage they provide the electronic record to us. The anonymity of the electronic data received from NHS Digital is achieved as follows:

1. Detailed health information such as hospital diagnosis codes or exact dates of hospital admission are transformed into less detailed information such as simple indicators (yes/no variables) or years of follow-up.

2. All personal identifiers, detailed hospital diagnosis codes and exact dates are deleted.

3. The records are identified with the numerical ID corresponding to the participant (pseudo-anonymisation).

4. The resulting pseudo-anonymised dataset is added to the rest of the research dataset.

If you do not want the electronic health records held by NHS Digital to be shared with us, you can register a type 2 opt-out with your GP practice. Further information can be found at http://content.digital.nhs.uk/yourinfo

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Do you share research data?

We have implemented a data sharing policy to make data as widely and freely available to scientists from the UK, other EU countries and overseas as possible while protecting confidentiality, and making sure that we maintain the reputation of the study, funders and participants.

The research data provided to these external collaborators are:

  • tailored to their project
  • securely transferred for their use only
  • identified with a numerical ID that is different for each project to avoid ID linkages between datasets released to different applicants. 

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Any more questions?

If you have any concerns, complaints, questions or would like further information regarding any aspect of the Whitehall II (Stress and Health) Study, you are welcome to contact us on:

Freephone:  0800 068 1562 

Email: whitehall2@ucl.ac.uk

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