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How your health data helps cancer services and research

GP health data is crucial for the planning and provision of health services as well as research discoveries that save and improve people’s lives. In this blog post, our Director of Research & Services Dr Stuart Griffiths answers your questions on the changes that are being made to the way GP data is collected and shared, and how they will help stop people dying from cancer in Yorkshire.

Imagine a digital warehouse that stores the health records of millions of people from across the country. Imagine if the data from these records – symptoms, test results, diagnoses, medications, and so on – could be shared securely and without individuals being identified. Imagine how valuable it could be to scientists developing new tests and treatments for cancer, and health leaders planning new screening services. What you’re imagining is in fact commonplace in England, thanks to the NHS and the health records kept by your GP.

However, the current system used to collect and share GP data is over 10 years old and places an additional burden on GP practices. That is why, earlier this year, NHS Digital announced that the system is changing. The new centralised system, called the General Practice Data for Planning and Research (GPDPR) programme, promises to reduce the work for GPs so they have more time to focus on patient care, while ensuring greater oversight on what our data is being used for.

Why is GP data important?  

For most people with potential symptoms of cancer (or any health condition), their first point of call is their GP. This means the data collected by GPs can provide a good picture of the health of local populations, and whether the health service is working as it should. Data from GPs helps with the planning of services, developing healthcare policies and improving the health of local communities.

For example, health data collected by GPs has been valuable during COVID-19, helping to identify and protect people at risk and offer vaccines to those in most need.

Importantly for Yorkshire Cancer Research, GP data plays an important role in advancing cancer research, helping to provide better prediction, diagnosis, and treatment of cancer in our region. All of this supports our goal of preventing people in Yorkshire dying from this disease.  

Who can access GP data?

NHS Digital has a strict process about who can access the data and for what reasons. The organisations which can have access to GP data include NHS and governmental bodies, local authorities, and research organisations including universities. Charities like Yorkshire Cancer Research can also request access.

Commercial organisations, such as pharmaceutical companies who develop drugs to treat cancer and other diseases can request access to the data. However, NHS Digital is clear that any application that has a commercial purpose must clearly show a benefit to health and social care in England and Wales before its approval. This is reviewed carefully during the application and approval process.

NHS Digital make it clear that your data is not shared with companies who could use it to promote or sell products or services, for market research or for advertising, and this will continue to be the case under the new GPDPR system.

Can I be identified from the data?

Data shared by NHS Digital is subject to strict rules around privacy, security and confidentiality. The system does not collect your name or exactly where you live. Any other data that could directly identify you, for example your NHS number, full postcode and date of birth, is not shared with anyone accessing the data.

There might be some instances where you would need to be matched back up with your data. For example, if you agreed to take part in a research project or clinical trial and provided consent to your data being shared with the researchers for this purpose. Only NHS Digital can match you back to the data, and will only do so if there is a lawful reason and in line with data protection law.

Does the NHS sell my data?

NHS Digital does not sell data, but it does charge organisations to cover the costs of making the data available to them. NHS Digital does not profit from this. This will not change under the new system.

Why are there concerns about the changes that will be made under GPDPR?

The public broadly supports their health data being shared to improve services. For example, research that formed part of developing the Yorkshire & Humber Care Record – an initiative to integrate health and care records across our region – found that almost 9 out of 10 people supported the use of their patient records to plan better services. 3 in 4 people were happy for their data to be used to study what puts people at risk of disease.

However, the Government wrongly assumed a high level of trust and public acceptance of the changes when they initially announced them in June. As a result, the new system was characterised as a ‘data grab’ by those who were critical of it, including some doctors, privacy rights campaigning groups and politicians.  

Some people became worried about the possibility of their data being used to identify them, handed over to marketing and insurance companies, or hacked by cyber criminals. There are safeguards in place to address these concerns, but it’s fair to say that there was not enough information available to let people know what was happening, or enough time for them to opt out if desired.

In response to these concerns, Jo Churchill MP, a minister at the Department of Health & Social Care, announced in July this year that the implementation of the GPDPR programme would be paused. One of the key reasons for this would be to allow for more time for better communication with the public about the scheme.

What is Yorkshire Cancer Research’s position?

At Yorkshire Cancer Research, we support the idea of the new GP data system, which is a welcomed improvement to the current outdated system. It will help our charity and the researchers we fund to improve cancer services in our region, and find ways to better understand, diagnose, and treat cancer. That’s why I signed a statement along with 18 other charities, published today by the Association of Medical Research Charities (AMRC), of which Yorkshire Cancer Research is a member.

At the same time, we also think pausing the implementation of the system is a good idea. The failed launch of GPDPR has been a major setback, and we encourage the Government and NHS Digital to learn from its mistakes. The time needs to be used effectively to scale up efforts to communicate the changes with the public. Although this will not be easy, health leaders must restore people’s trust in the system and how their data is shared, because the participation of the public is vital to the success of the initiative.

We hope the Government and NHS Digital will use the months ahead to clearly address these concerns and communicate the importance of this data. But momentum must be maintained – this programme is too important to be put on hold forever.

I don’t want my data to be shared, what can I do?

If you decide that you do not want your GP to share your patient data for purposes except for your own care, you can opt-out by registering a snappy titled Type 1 Opt-out. This prevents your data being shared with NHS Digital.

However, if lots of people choose to opt out then the overall data set becomes less useful for planning services and conducting research. If that happens then services may not reflect the needs of different groups or areas and research may reach misleading conclusions.

What do I do if I have opted out but have changed my mind?

If you change your mind and decide you’d like your data to be shared, contact your GP surgery. They will be able to help reverse your opt-out request.

Find out more from NHS Digital about the changes to GP data collection, known as the General Practice Data for Planning & Research (GPDPR) programme.