What is patient data and how can it help cancer research?

This month marks a big change in health services as the NHS introduces a new national data opt-out service to give patients more control over how their personal information is used.  We take a look at the new system and how data acts as a powerful tool in cancer research.

What is the National Data Opt-out?

From May 2018 patients will be able to opt out of having their confidential information shared for reasons beyond their own treatment, using an online tool created by NHS Digital.    

The tool has been developed to support the new National Data Opt-out system, whereby the public can choose over whether or not their personally identifiable healthcare data can be used for reasons other than their care, specifically:

•  research purposes – such as finding ways to improve treatments; and 
• planning purposes – such as data use to improve delivery of health services.   

People who use health and care services in England will be able to make their choice through a simple opt-out question, and their preferences will be applied to all health and care organisations by March 2020.  You can set and change your choice as many times as you like.  

Click here to find out more and manage how your patient data is used.  

What is patient data?

‘Patient data’ is an umbrella term for a whole range of health information and personal details that are logged whenever we come into contact with health and care services.  When you visit the GP or local hospital, for example, details about your health and medical history will be collected and stored in your patient record.  A patient record may include your height and weight, how much you drink, list any allergies, and what mediations you take.  It may also record test results, images from MRI scans, and procedures you’ve had.  

Although only healthcare professionals involved in your treatment can access your medical records, there are many other invaluable ways that patient data can be used for research.  Take a look at some of the ways your information can bring about advances in healthcare.    

How can my data benefit cancer research?

Patient data has huge potential to help researchers prevent, diagnose and treat disease.  This is particularly important with rarer cancers, like ovarian, where opportunities to learn more about a disease are scarcer.  By collecting, joining up, and analysing data from ovarian cancer patients in a safe and confidential way, doctors and clinicians are in a stronger position to:

•  Understand more about the factors that affect cancer-risk 
•  Identify women who are more likely to develop ovarian cancers
• Study the effectiveness of treatments and interventions
• Identify suitable people to participate in clinical trials 

Ovarian Cancer Action researcher Mara Artibani explains how patient information drives her research on chemotherapy-resistance in women with ovarian cancer:

“Patient data is essential for medical research and cancer biology is no exception.  Animal models and lab-grown cancer cells are extremely helpful tools for researchers.  However, we must not forget that we’re studying a human disease and, if we are to make real progress in our fight against ovarian cancer, access to patient tissue samples and their medical records is indispensable.

“For example, one of our main projects aims to better understand and overcome chemotherapy-resistance in ovarian cancer patients.  Our ultimate goal is to develop new treatments that target the small sections of tumour cells that manage to survive chemotherapy before the cancer can recur.  As part of this, we’ve analysed almost 200 ovarian cancer samples that have been collected from different patients before and after chemotherapy and we’re now seeing very promising and exciting preliminary results in our research.  None of this would have been possible without all the women that gave consent for their biopsies to be analysed and their health record to be accessed.  We’re extremely grateful to each and every one of them. 

“Having said that, we totally support the patient’s right to privacy and we recognise that the whole data sharing process does not work unless there is complete trust and transparency: for this reason, we receive extensive training and guidance on how to keep the patients samples and their data safe and secure (from compliance to the Human Tissue Act to information security), with the hope that we can all keep fighting together against cancer.”

Find out more about your options and how your data is used and kept secure at NHS Choices and Understanding Patient Data.