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.

Upcoming events

Date Location Details and registration

8 Nov 2021


National Cancer Research Institute Festival

The UK’s largest cancer conference will bring together the brightest scientific and medical minds to advance cancer research in the UK

Taking place on 8-12 November 2021, the NCRI Festival will feature a number of topical sessions, panel discussions, debates and co-creation sessions on strategic topics, as well as proffered paper presentations highlighting the latest cancer research.

The programme includes a session on 11 Nov 2021 at 13:00 titled 'Harnessing the patient voice to remove the road-blocks around tissue donation and data sharing', which includes speakers from use MY data.

Registration is open here 

29 Nov 2021


Precision Medicine Forum-Patient Week

Monday, 29 November to Thursday, 02 December (revised dates)

Precision Medicine Forum’s online Patient Week event will run from Monday, 29 November to Thursday, 02 December.  This follows the inaugural and successful Patient Week, held in March this year. 

Patient Week “convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions.” 

The event will include panel discussions between industry, patient groups, patients, researchers and healthcare professionals.  There will be the opportunity to ask any pressing questions you may have during these talks.  Additionally, you will be able to join roundtables and take part in 1-to-1 networking.

use MY data is proud to be a partner for the event and will be taking part in the programme and exhibiting online.

The event is free to attend for patient advocates, researchers, not for profit organisations, charities, and health care professionals. 

Further details and registration are here https://precisionmedicineforum.com/our-conferences/patient-week/.  Details of the programme will be available shortly.

Patient data citation
"This work uses data provided by patients and collected by the NHS as part of their care and support"

The patient data citation was conceived and developed by the patients and carers in the use MY data movement. It has been widely adopted by data and research organisations, and recommended for adoption by the major research funders in the UK. We would like to acknowledge Understanding Patient Data's adoption and promotion of the citation.

Find more here

Patient tissue citation
"This research was possible only because patients have donated their tissue"

Following the successful adoption of the patient data citation, and following a joint project with the Medicines Discovery Catapult and Incisive Health, we have developed a patient tissue citation. We will be working with stakeholders to promote the citation and push for widespread adoption.

Find more here

The citation has been mandated, adopted or used by:


15 Oct 2021:

The NCRI Consumer Forum is hosting a short survey, which will feed into the session Harnessing the patient voice to remove the roadblocks around tissue donation and data sharing at the NCRI???s November festival

8 Oct 2021:

UK Biobanking Showcase 2021
Moved from October 2021. Will run online from 08 to 10 February 2022 as the UK Biobanking Showcase 2022

8 Oct 2021:

ADR UK Public Engagement Strategy 2021-2026
Administrative Research Data UK (ADR UK) has published its Public Engagement Strategy 2021-2016

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. 

Project: The Patient Data Citation

"This work uses data provided by patients and collected by the NHS as part of their care and support"

Read about the development

Project: National Data Opt-out: information to patients?

Our work to examine what information is available to patients in GP Practices about the National Data Opt out

Read about this

Paper: Recognising patient responsibilities for data

A paper written by use MY data to examine whether the NHS Consitution could be rewritten to place as much emphasis on our responsibilities as patients as we have about our rights

Read our article

Project: Campaign for the use of tissue samples

A joint campaign with the Medicines Discovery Catapult is seeking to gain recognition that only 15% of tissue samples which are stored in tissue banks are actually used.

Read more here

Policy: Our stance on Transparency

Transparency should underpin everything and is essential if the trust and support of patients and the public is to be maintained and developed. In a nutshell – Say what you do, do what you say.

Read about our position here

Workshop: Improving access to data

Our workshop held under the banner All talk and no access? explored the practical and regulatory obstacles to more widespread use of patient data in both academic and clinical research.

Read the workshop summary here

"I am interested in people being able to benefit from the use of my data and other relevant data, because it helps in making plans, improving the system and checking on progress of what is being given to us - the treatment we're getting"

Patient advocate, use MY data

What we do

  • We promote the benefits of sharing and using data to improve patient outcomes with sensible safeguards against misuse.
  • We act as a sounding board for patient concerns and aspirations over the sharing and using of data in healthcare and health research.
  • We host patient data workshop workshops for patients and the public.  The wide-ranging programmes are devised by our members.
  • We advocate public policy that supports the effective use of patient data within appropriate frameworks of consent, security and privacy, and
    with the aim of providing benefit to patients and their health care services. 
  • We advise and support organisations who want to collect, store and use patient data for patient benefit, on topics such as consent, audit of clinical practice, security and privacy.
  • We have developed a citation that acknowledges the use of patient data – This work uses data provided by patients and collected by the NHS as part of their care and support.  This has been adopted by Understanding Patient Data who have helped to spread the message.

"Knowledgeable patients are already proving they can play a pivotal role.

Take the great work of the movement that is 'use MY data', harnessing the patient voice to build confidence in the use of data for improvements."

Health Service Journal, Oct 2017

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