BWHHS Newsletter: Issue 5, April 2021

In 2015, we contacted you to study team moved to the Institute of Health Informatics at University College of London. The study is now administered from the new site, and the data that you have given us will be stored securely at UCL, and the blood samples you provided are currently securely stored off site. Your data will remain completely confidential and will be used for research only.

We also notified you about the GP record review that would be taking place in 2016, and this is now completed. We have been looking at the changes in the health and well being of the study group, including research on two newly collected diagnoses atrial fibrillation and dementia. We will update and summarise our important findings on our website as our research is published.

Introducing the study directors

Dr Rui Providencia

Rui Providencia is a Clinician Scientist at the Institute of Health Informatics (UCL) and a Honorary Consultant at St Bartholomew's Hospital.

He was the recipient of the 2015 Young Investigator Award of the European Heart Rhythm Association and has authored nearly 200 publications in the field of cardiology and arrhythmias, some of which have been included in international guidelines for the management of cardiovascular disease.

His research interests are atrial fibrillation, sudden cardiac death, catheter ablation, clinical epidemiology and genetics.

Professor Reecha Sofat

Reecha Sofat is a Professor at the Institute of Health Informatics and Honorary Consultant at the Faculty of Medical Sciences.

What’s new at the BWHHS?

• We have completed the data collection of our sixth review of participants’ GP records started in 2017.
• We thank our colleagues in the General Practices across England, Wales and Scotland for always taking the time to complete these forms which provide an important update on the health of our cohort members.
• We have new co-directors on the study
• We will be writing scientific papers to describe the newly collected outcomes dementia and atrial fibrillation. Data in papers is only presented in aggregate form, meaning we present data for large groups in the study and not details on any individual person or their diagnosis.
• We are currently working on receiving further funding. The British Regional Heart Study (the male cohort), continues to receive funding from the British Heart Foundation.
   

Our updated website

• As you may remember, as part of our Newsletter in 2015 we told you about our move to University College London.
• To see the new website go to https://www.ucl.ac.uk/british- womens-heart-health-study/
• Here you will find pages on the background of the study; the people involved in the study; the current research we are working on; the output from the study (research papers and health guidelines that have changed because of them); and current news which includes the participants page and our contact details.
• The participants page describes your data rights, data we  use and why, and your rights to opt out from your data being used. We summarise this below. To go directly to the full information go to https://www.ucl.ac.uk/british-womens- heart-health-study/communication/participants
   

What data we have?

• Throughout the study you have provided us with your information through questionnaires, an interview and examination with a nurse and from your blood test results.
• GP surgeries are contacted every few years to provide information on address details and any diagnoses of cardiovascular events, cancer, diabetes or dementia.
• We also receive data from NHS Digital who routinely provide us with notifications of participants that have passed away, cause of death, entry and exit to the NHS system and notifications of cancer registrations.
• Personal identifiers of BWHHS participants (including name, date of birth, NHS number and postcode) are securely sent to NHS Digital and your GP to provide a link to the data that they already hold.
   

Your data rights

• We sought your consent at the beginning of, and throughout the study to comply with Data Protection laws and to observe the common law duty of confidentiality owed to patients.
• This gives us your permission to hold and use information that identifies you, for research. It also allows us to follow up on any changes to your health.
• You will not be identified from the research - researchers do not see your name with your information - they just see your study ID number.
• Taking part in the project is voluntary and you are free to withdraw at any time without giving a reason.
• In the same way as a doctor who treats you is bound to keep your information confidential, the BWHHS are bound to keep your information confidential.
• You have the right to withdraw consent at any time. If you are considering withdrawing from the study, please contact the study coordinator Julie.a.taylor@ucl.ac.uk or telephone 0203 549 5064. The BWHHS will respect your consent decision.
   

Where can I find out more information about the British Women’s Heart and Health Study?

• We are based at the Institute of Health Informatics, part of University College London. You can contact us at: British Women’s Heart and Health Study (c/o Dr Rui Providencia/Professor Reecha Sofat) UCL Institute of Health Informatics, 222 Euston Road London, NW1 2DA
• We are more than happy for you to contact us at any time with any queries or ideas that you have about the study. You can contact the study coordinator Julie Taylor on 0203 549 5064.
   

Where can I find out more information about coronary heart disease?

• Coronary heart disease is the biggest cause of death and disability among women in Britain but it is  still often seen as a man’s disease.
• If you want to know more about coronary heart disease – what causes it, how to prevent it, how to treat it – then contact the British Heart Foundation (BHF)

British Heart Foundation  
14 Fitzhardinge Street  
London    
W1H 6DH 
Free Heart Info line: 08450 70 80 70
Tel: 020 7935 0185
Email: internet@bhf.org.uk
Website: https://www.bhf.org.uk/informationsupport

• The National Heart Forum (NHF) is a leading alliance of over 40 national organisations working to reduce the risk of coronary heart disease in the UK.

National Heart Forum  
Tavistock House South    
Tavistock Square    
London, WC1H 9LG    
Tel: 020 7383 7638
Fax: 020 7387 2799
Email: webenquiry@heartforum.org.uk
Website: www.heartforum.org.uk
 

This study would not exist without your continuing support, so from all of the BWHHS team, a huge THANK YOU!
If you have any queries, please contact us on 0203 549 5064 julie.a.taylor@ucl.ac.uk