The National Disease Registration Service (NDRS) for England is publishing a regular series of data stories and asking use MY data to comment on each one, bringing a patient perspective to the use of patient data.
Each data story focuses on a complete piece of work with the aim of being able to discuss not only what was involved, but to demonstrate impact too. As these stories are developed, they will all be listed here:
How patient data is being used to explore the long-term risks of ductal carcinoma in situ
'This story shows the power of data to confirm that some DCIS can progress to invasive breast cancer, and that survivability of women may therefore be affected. It also shows that mastectomy may be safer than wide local excision or lumpectomy, raising the question of how women will view this. Use of data has defined the need for more intensive follow up for longer than the current recommendation of 5 years, and further work should protect women by identifying how often they should be checked up on and how they can protect themselves in the meantime by being breast aware and vigilant.'
'Use of this real-world data can provide more certainty and protection for women diagnosed with DCIS.'
Jacqui Gath, use MY data Member
How patient data is being used to study the link between cancer and cardiovascular disease
The Virtual Cardio-Oncology Research Initiative (VICORI) uses patient data to study differences in risk factors, treatments and outcomes between people with cancer, cardiovascular disease, or both. Cardiovascular disease covers all conditions affecting the heart or blood vessels.
The National Disease Registration Service worked with use MY data member Paul Charlton on the story. Paul helped to shape the VICORI research as a member of the Programme Board.
Paul Charlton, use MY data Member
Patient data was used to understand how people with rare autoimmune diseases have been affected by the COVID-19 pandemic
This research is very important for people with a rare disease. When someone is diagnosed with a rare disease, they are often shocked and worried. Research like this helps clinicians to provide the right treatment and to advise the patient on how to manage their condition. Often people with a rare disease join a patient support group and research like this can also help the group to advise its members.
‘This study shows what can be done when trusted organisations use our health data. When data from a whole population is used and different parts of our health data are linked together, we get a better picture of the most important issues.’
David Snelson, use MY data Member
How Patient data is being used to improve sarcoma care in England
'Cancer registry data was not available when the NHS set up the network of specialist sarcoma treatment centres in England twelve years ago. Now that patient data is being collected and made available it is helping patient treatment to improve, although it also reveals how much work there is still to be done. It is our data, it records what happens in our treatment and care, and it is now being used to benefit us. The data shows us that speedy diagnosis and specialist treatment improves survival, the ambition we all share.'
Roger Wilson, use MY data Member
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