The National Disease Registration Service (NDRS) is publishing a series of data stories and asking use MY data to comment on each one, bringing a patient perspective to the use of patient data.
The first data story focusses on the Registration of Complex Rare Diseases – Exemplars in Rheumatology (RECORDER) project, highlighting how patient data has been used to understand howpeople with rare autoimmune diseases have been affected during the COVID-19 pandemic.
David Snelson, Advisory Group Member, reviewed the data story and commented:
“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.”
The data story was published on 07 April and is available here.
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Please use the patient data citation:
"This work uses data provided by patients and collected by the NHS as part of their care and support"
The patient data citation was conceived and developed by the patients and carers in the use MY data patient movement. It has been widely adopted by data and research organisations, and recommended for adoption by the major research funders in the UK.
use MY data is a movement of patients, carers and relatives
use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.
use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.
use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.
Our vision is of every patient willingly giving their data to help others, knowing that effective safeguards to maintain the confidentiality and anonymity of their data are applied consistently, transparently and rigorously.