Royal Free audit of Streams

(Published to the use MY data site on 2018-06-28)

The Royal Free`s independent audit of Streams is here

From a patient & data point of view, notable recommendations are:

  • Retention period - The Royal Free is not currently storing confidential patient information in Streams for longer than necessary. However, it has not set a formal retention period for that information. The Royal Free should review this matter and set a retention period for the information in Streams (see paragraph 27).
  • Rights to object to processing - The Royal Free should consider amending its response letter to patients who opt out of Streams, to inform them that it could adversely affect their care (see paragraph 28.2).
  • Telling patients about Streams - The Royal Free has provided a lot of useful information about Streams on its website. However, it should do more to bring this to the attention of visitors to its hospitals, e.g. notifying patients using the electronic registration screens.

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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.