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.

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A trusted patient voice on patient data - organisations that we formally engage with

As a trusted patient voice on patient data, we engage with a variety of organisations.  Our work is not about providing approval or endorsement, rather our Members use their lived experience to provide views on the use of patient data.

As a priority, the Secretariat always strives to ensure that our Members are reimbursed for regular engagement work.  For some engagement arrangements, use MY data as an organisation receives a contributory payment, which goes towards the running of use MY data.

 

Current engagement work

Association of the British Pharmaceutical Industry (ABPI) 

The Association of the British Pharmaceutical Industry (ABPI) approached use MY data to discuss the possibility of engagement work.  Following discussions with the Advisory Group and joint creation of Terms of Reference (ToR), the agreement is now in place, initially running from 01 July 2022 until the end of 2023, at which point it will be reviewed.  The engagement work is likely to begin this September.   

From the ToR: “The purpose of the relationship is to enable the ABPI to work with use MY data’s Advisory Group to create a test bed for messaging and approach.  This will inform the ABPI’s multi-year engagement programme to build public confidence in industry use of health data for research purposes.”.

While discussions will be of a confidential nature, a condition of use MY data entering into the agreement was for the arrangement and funding details to be declared publicly by use MY data and the APBI, for transparency.  The ABPI agreed to this: “The ABPI respects the position of use MY data as an independent patient movement and will make public the relationship, including details of any funding provided”.

The Terms of Reference is available here

 

Details of oher arrangements will follow on this page.

 

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