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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Our reports and consultation responses

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

Our responses are coordinated by the Secretariat, on behalf of the Advisory Group. Our Advisory Group acts on behalf of use MY data’s Members – patients, relatives and carers who want patient data to be used for research.  For consultations, the Secretariat would usually consult with all of our Members to seek their views and include all of these in our response - we believe there is strength in presenting a wide range of patient views about the use of patient data. 

CONSULTATION RESPONSE: Scottish Government "Data Strategy for health and social care”, August 2022

STRATEGY RESPONSE: NHS England "Data saves lives: reshaping health and social care with data”, August 2022

CONSULTATION RESPONSE: DARE UK "Towards a coordinated national infrastructure for sensitive data research”, July 2022

INQUIRY SUBMISSION: UK Parliament Inquiry - digital data: the right to privacy, March 2022

CONSULTATION RESPONSE: ABPI Consultation on industry principles for use of health data, March 2022

CONSULTATION RESPONSE: Department for Culture, Media & Sport, Data: A new direction, Nov 2021

CONSULTATION RESPONSE: UK Health Data Research Alliance: feedback on a data use registers Green Paper, September 2021

CONSULTATION RESPONSE: NHSX Data Strategy: 'Data Saves Lives: Reshaping Health and Social Care with Data', July 2021

CONSULTATION RESPONSE: Goldacre Review: use of health data for research and analysis, March 2021

CONSULTATION RESPONSE: Department for Digital, Culture, Media & Sport (DCMS): The National Data Strategy, November 2020

INVITED SUBMISSION: NHS Digital Strategy Meeting: Trusted Research Environments, October 2020

WORKSHOP SUMMARY: Summary of our workshop: The COVID-19 exit strategy - what next for patient data? and our
FOLLOW UP LETTER to NHSX about the need for a data release register for the NHSX COVID-19 Data Store, October 2020

CONSULTATION RESPONSE: National Data Guardian: Caldicott Principles: a consultation about revising, expanding and upholding the principles, September 2020

CONSULTATION RESPONSE: IG guidance on using video-conferencing/consultation tools, August 2020

ARTICLE RESPONSE: Article by Understanding Patient Data: A new approach to decisions about data,, July 2020

INVITED RESPONSE: Draft documents from NHSX: IG Guidance for Review, July 2020

CONSULTATION RESPONSE: HDR-UK: How can we put the UK at the forefront of data science to enable discoveries that improve people's lives? Your ideas and suggestions, July 2020

INVITED RESPONSE: PHE: We were asked by PHE if our membership would like to suggest topics for their future events, June 2020

CONSULTATION RESPONSE: Trusted Research Environments (TRE): A strategy to build public trust and meet changing health data science needs, May 2020

CONSULTATION RESPONSE: :Private Healthcare Information Reporting Change Proposal, May 2020

CONSULTATION RESPONSE: ICO Guidance on the Artificial Intelligence auditing framework, cover letter and completed questionnaire, April 2020

LETTER: Chair of the Independent Inquiry - Data sharing between the Lewisham and Greenwich Hospitals NHS Trust and Experian, March 2020

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

CONSULTATION RESPONSE: NHSX consultation on Information Governance Glossary, September 2019 together with the annotated document

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

 

 

 

 

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