Accountability transparency and public participati

(Published to the use MY data site on 2020-03-02)

Understanding Patient Data have published new research on what the public thinks about businesses and organisations using data held by the NHS.

The research shows that members of the public support the use of NHS held health data by third parties, only when there is benefit to patients across the UK, rather than for short term financial gain for the NHS. Benefits to patients includes things like improving disease detection or developing new medicines and treatments.

Dr. Natalie Banner, who leads Understanding Patient Data said This research shows that people are excited by the idea that NHS held data could be used to improve care for patients, and help everyone live longer, healthier lives. At the same time, this data is about people, so the public should have a say in how its used. The Government must act now or risk damaging the trust people have in the NHS.

Produced by use MY data

Further details from contact@usemydata.org.uk

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.

About use MY data

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

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. 

 

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