How GP data helps improve human health : Participant Event
Below you can watch on-demand content from UK Biobank's participant event, find out more about the speakers and explore answers to common questions about GPDPR.
Please note that we faced technical difficulties at the start of this event which are resolved from the second presentation onwards. Closed captions are available for this video, and a full transcript is available in the useful links section.
For the past 10 years, we’ve been able to obtain information about all hospitalisations, cancer diagnoses, and deaths of UK Biobank participants from the NHS centrally. Combined with the information that UK Biobank participants have provided us about their lifestyle and assays of blood samples that they provided (including genetic assays), researchers around the world have been able to make discoveries that would not otherwise have been possible.
However, despite explicit agreement from UK Biobank participants that we could have access to all of their medical and other health-related records for all types of health-related research that is in the public interest, we have not been able to obtain access to such data from General Practices (GPs). That is because the GP data are not all held centrally by the NHS, but instead are controlled by thousands of individual GPs. During the pandemic, emergency legislation has made it possible for UK Biobank to access the GP data of participants solely for the purpose of COVID-19 research. This access has demonstrated just how valuable the GP data can be for research using the UK Biobank resource.
There has been a lot of confusion in the media about the recently announced plan – called the General Practice Data for Planning and Research (GPDPR) – to add GP patient records to all of the other medical data. Therefore we wish to provide participants of UK Biobank with more information about both the benefits of making these data available and the safeguards that are in place to ensure their appropriate use, so they will understand why UK Biobank supports NHS Digital’s plans to add GP patient records to all of the other medical data that are already available centrally. In particular, we would like to encourage participants in UK Biobank not to opt-out of GPDPR because, if they do, their GP data would not be available – despite their original consent – to UK Biobank for research.
At the end of this page you will find answers to some common questions about GPDPR and details of our upcoming participant event which will discuss how instrumental linking to health related records have been for scientific discoveries and will be for more future health research.
The agenda and speakers
14:00 - Introduction
Professor Sir Rory Collins
14:05 - The value of GP data linkage (TBC)
Professor Liam Smeeth
14:15 - Why GP data is important for UK Biobank
Professor Naomi Allen
14:25 - Title TBC
Professor Helen Jayne Stokes-Lampard
14:35 - Q&A
14:55 - Closing remarks
Professor Rory Collins
FAQ: About GPDPR
GPDPR stands for General Practice Data for Planning and Research. This is an improved collection of primary care data from GP practices in England, proposed by NHS Digital. The new data collection reduces the burden on GP practices, allowing doctors and other staff to focus on patient care.
The GPDPR dataset contains coded data on symptoms, diagnoses, test results, allergies, referrals, vaccination and prescriptions. It does not contain any written notes (free-text) or any letters or scans.
No. NHS Digital’s plans for making health data available for research are not new. NHS Digital has been collecting health data (including GP data) and enabling access by approved organisations for healthcare planning and research for public benefit for many years. However, the system has been inefficient and ineffective because it has relied on each GP practice giving their approval for the release of the data. This new, improved and automatic system will help to support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including coronavirus (COVID-19) and enable many different areas of research.
Following feedback provided to NHS Digital, the GPDPR data collection is delayed to allow sufficient time to improve in three key areas:
- To develop centralised, automatic processing of opt-outs and opt-ins, to reduce the burden on GPs.
- To make data available only through a secure online system, known as a Trusted Research Environment (TRE). Through a TRE, users can only access data for which they have been approved and cannot download patient-level data to carry out unapproved analyses.
- To allow more time for a public awareness campaign to ensure the public is aware of their data choices.
FAQ: Impact on UK Biobank participation
You do not need to take any action in order to opt in to GPDPR. Your data will be automatically incorporated into the NHS central system and made available to the UK Biobank resource to enable scientific discoveries to better understand how to prevent, diagnose and treat a wide range of serious and life-threatening illnesses.
In 2016, UK Biobank obtained GP data for about half of its participants in England and these data were released to researchers a few years later. Since then, individual GP practices were asked to ‘opt-in’ to release the data and this process was highly inefficient and GP data collection was effectively stalled. During the pandemic, emergency legislation enabled GP data for participants in England to be made available to UK Biobank for the sole purpose of COVID-19 research. NHS Digital has now launched the GPDPR data collection, which will enable GP data to be accessible for wider research and healthcare planning purposes. This will enable the medical research community to use these data for research into a very wide range of diseases that are commonly treated in primary care, such as arthritis, depression, asthma, diabetes and dementia.
The GPDPR programme only collects data from GP practices in England. UK Biobank has had (and continues to have) access to GP data from data providers in Scotland and Wales. Hence, the GPDPR collection does not apply to participants in Scotland and Wales.
The availability of GP data will – as has been shown in the past year for COVID-19 – be hugely valuable for health research. For example, we have already seen how sharing GP medical records can be used to improve patients’ lives in the fight against COVID-19. Allowing NHS Digital (and UK Biobank) access to your coded GP data is vitally important as it will substantially enhance the research that could be done and allow a much wider range of important health findings to emerge (e.g. better understanding of mental health, pain, etc).
If you choose to opt out of GPDPR (Type 1 opt-out), your relationship with UK Biobank does not change and you will still be able to participate in future follow up studies, such as questionnaires and imaging. However, your GP data will not be able to leave your GP practice and therefore cannot be added to our biomedical database and made available to approved researchers. Allowing NHS Digital access to your GP data is vitally important as it will enable UK Biobank researchers to better understand the genetic and environmental determinants for a very wide range of diseases.
If you have previously registered a Type 1 Opt-out and you would like to withdraw this (i.e. opt back in and allow your GP data to be shared), you can visit the NHS website to complete a Type-1 opt out withdrawal form or you can download a copy of the form here. You can send the form by post or email to your GP practice or call 0300 3035678 for a form to be sent out to you.
UK Biobank obtains data on hospitalisations, cancer diagnoses and deaths through a centralised system within NHS Digital, which is the information and technology partner of NHS England.
FAQ: About opting-out
Type 1 opt-out (GPDPR) prevents NHS Digital collecting data from your GP practice. This means that your GP data cannot be added to UK Biobank’s resource and made available to approved researchers, and nor can it be used by other organisations for healthcare planning and research.
The National Data Opt-out (previously called Type 2 opt-out) prevents NHS Digital sharing any confidential patient information – including GP data and hospital data – with other organisations. However, UK Biobank is exempt from a national opt-out because the consent provided by all participants when joining UK Biobank overrides this opt out (but it does not over-ride a Type 1 opt-out, so GP data would be withheld from UK Biobank).
No. Following recent feedback (19 July 2021), you can choose to opt out of the data collection whenever you wish to, which will mean all of your data is deleted (not just the data from the date you opted-out). However, if you do opt-out, it will mean that your data cannot be incorporated into the UK Biobank resource to enable scientific discoveries to better understand how to prevent, diagnose and treat a wide range of serious and life-threatening illnesses.
Read more here:
We strongly encourage participants not to opt-out of GPDPR using a Type 1 opt-out. Doing so would mean that your GP data will not be shared with UK Biobank. If you are happy for your health data to be accessed by UK Biobank, but not for wider research and planning purposes, then you can choose the National Data Opt-out, which means NHS Digital will not share your confidential patient information with external organisations, unless you have provided consent (as you have for UK Biobank).
FAQ: Data privacy and security
NHS Digital has engaged with the British Medical Association (BMA), Royal College of GPs (RCGP) and the National Data Guardian (NDG) to ensure relevant safeguards are in place for patients and GP practices. UK Biobank and its appointed data processors store your data securely and to the highest industry and professional standards. These de-identified data are only available to approved researchers undertaking authorised health research.
No. People’s personal data are managed appropriately at all times and with the most stringent controls in place. That is why NHS Digital has a rigorous approval system for researchers, tried and tested over many years, and will only allow access to researchers and organisations (like UK Biobank) who are undertaking health-related research. All requests are subject to independent oversight and scrutiny, and audits are conducted to ensure the data are being used for the approved purpose.
Your GP data will be treated in exactly the same way as the other data we have collected about you. The data will be kept by UK Biobank for many years. They will be provided in a de-identified form (such that no participant can be identified from their data or samples) to approved researchers for medical and other health-related research.
We have strict measures in place to protect your confidentiality. These include the following:
- We do not include any details that will identify you in any data we provide to researchers.
- We keep any information that might identify you (such as your name and address) separately from other information about you in our database.
- We use advanced computer security technologies to prevent unauthorised access to the computers that hold personal information.
- Our procedures comply with international standards (ISO/IEC 27001) for information security and management. We are externally audited and we comply with the guidance contained in the UK Government’s ten cyber security steps.
- We restrict access to personal information as much as possible, and all research staff working for us sign confidentiality agreements as part of their employment contracts.
This should prevent identifiable information from being used – inadvertently or deliberately – for any purpose other than to support the running of UK Biobank. The basis on which we process your personal data is explained on our website at https://www.ukbiobank.ac.uk/explore-your-participation/basis-of-your-participation. This includes an explanation of the way in which we protect your data and remove any personal identifiers before making any data available to researchers.