Our mission

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.

Current data matters: General Data Protection Regulation (GDPR)

General Data Protection Regulation (GDPR) (25 May 2018)

The General Data Protection Regulation (GDPR) applies across the EU and brings more rights about how personal information is used.

The EU passed the new legislation in April 2016, and the full text of the regulation was published some time ago.

As the UK is due to leave the EU in 2019, a new Data Protection Act has been passed, receiving Royal Assent on 23 May 2018, which enacts the GDPR in UK law, with some small changes. You can access full details of The Data Protection Act 2018 here.

The website of the Information Commissioner's Office includes some very useful information relating to GDPR, including addressing some of the myths.

The link to the ICO website is below:

Information Commissioner's Office: Data Protection reform.

 

European Patient Forum - The New EU Regulations on the Protection of Personal Data: what does it mean for patients? (29 March 2018)

IThe European Patients Forum have produced a useful document which outlines what the GDPR means from a patients’ perspective and how patients’ organisations can contribute to ensuring that patients’ rights to privacy, data sharing, and accessing their health data are implemented optimally.

The document is available here

 

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