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.

Publications and consultation responses from use MY data

The use MY data Secretariat coordinates the production of responses to consultations, letters to stakeholders and written summaries of workshops. These are listed below.

CONSULTATION RESPONSE: ICO and Turing Institute - Consultation on the ICO's ExplAIn draft guidance, completed questionnaire, January 2020

CONSULTATION RESPONSE: MHRA consultation - Seeking views on how we engage and involve patients and the public in our work and completed questionnaire, October 2019

CONSULTATION RESPONSE: NICE consultation on the use of broader data and analytics, September 2019

CITIZENS JURY: What constitutes a fair partnership between the NHS and researchers, charities and industry on uses of NHS patients' data and NHS operational data?, September 2019

CONSULTATION RESPONSE: ICO consultation on the draft updated data sharing code of practice, August 2019

CONSULTATION RESPONSE: DHSC consultation on 'Creating the right framework to realise the benefits for patients and the NHS where data underpins innovation, August 2019

PAPER: use MY data position on Digital Innovation Hub bids, June 2019

WORKSHOP SUMMARY: Patient data - balancing access and protection; All talk and no access?, May 2019

CONSULTATION RESPONSE: Consultation by the National Data Guardian, March 2019

LETTER: To NHSE Medical Director about National Breast Audit, December 2018

- response to the letter received here

WORKSHOP SUMMARY: The patient voice in the expanding data world, November 2018

PAPER: The National Data Opt-out what it means for cancer registration data, November 2018

PAPER: Rebalancing the NHS Constitution, September 2018

CONSULTATION RESPONSE: Consultation on the new Centre for Data Ethics and Innovation, August 2018

WORKSHOP SUMMARY: Your data, your control (use MY data workshop), May 2018

CONSULTATION RESPONSE: use MY data response to PHE call for evidence - MoU for data sharing between NHS Digital & Home Office

WORKSHOP SUMMARY: Primary Cares pivotal role regarding patients and their data, December 2017

WORKSHOP SUMMARY: Commercial uses of patient data report, October 2017

CONSULTATION RESPONSE: to the APPGC Inquiry, August 2017