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.




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:

Noticeboard

3 Aug 2023:

AI in healthcare: learning from success stories
The Academy of Medical Sciences has published a report on its engagement work around using AI in healthcare - AI in healthcare: learning from success stories. use MY data Members Debbie Keatley, Sarah Markham and John Marsh took part in the work, participating in “discussions around next steps to accelerate adoption of AI into health care”. “Artificial intelligence-based healthcare technologies have great potential to transform health outcomes and the UK’s healthcare system. However, there are currently barriers to their adoption and scale-up. It’s time to learn from the technologies that have overcome these challenges and harness the full potential of AI in healthcare. Our FORUM workshop in March, held in partnership with the Royal Academy of Engineering, looked at accelerating safe and effective adoption of artificial intelligence in the healthcare system. We brought together representatives from academia, industry and the health and social care sectors, along with patients and regulators. They discussed what lessons can be learnt from the AI technologies already in use in healthcare…” The report, along with an executive summary with next steps, was published on 28 July here.

3 Aug 2023:

Navigating Digital health: A guide to data and art
A team at Imperial College London has published the useful summary guide - Navigating Digital health: A guide to data and artificial intelligence in healthcare focussing on how “Artificial intelligence is starting to help organise and deliver healthcare”. The guide aims to “help everyone understand more about data and artificial intelligence. We want each and every person to have the confidence to make choices that are right for them about their data and its use in healthcare”. “In the Department of Surgery and Cancer, we involve patients and the public in all stages of our research. We noticed that more and more researchers were bringing research projects involving data science and artificial intelligence to the patient and public involvement group, yet the group felt they did not have adequate knowledge of this field to contribute to the research in meaningful ways. So, we decided to design a guide to data and AI for the public, by the public. This would be a free educational resource for everyone, to encourage informed patient and public involvement in research projects and the development of apps and devices that patients would want to use to support their health.” The guide was published on 04 July and is available here. One of our Educational Sessions is on this same theme – Artificial Intelligence and Machine Learning – an introduction - and is available in our Members Learning area.

3 Aug 2023:

Help shape health data research in Cambridge
The National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre (BRC) is hosting Help shape health data research in Cambridge on Tuesday, 29 August, 18:30 to 20:00, online. “Medical records contain a wealth of health data including tests, diagnoses, treatments, and outcomes. These data can be used in cutting edge health data research including modelling more efficient planning of services, identifying new treatments that work for specific patient groups or training AI models to help clinicians diagnosis illness faster. These innovations can ultimately help to improve services and transform the care that patients receive. It is vital that researchers work with patients and the public to ensure that health data are used in ways that protect privacy and that patients are comfortable with. CUH [Cambridge University Hospitals] have established the Electronic Patient Record Research and innovation (ERIN) database and will be setting up a patient panel to review applications from researchers for data; information on how you can get involved in and start shaping health data research will be provided at the event…” The event is free to attend and open to all. Details and registration are available here.

Read all noticeboard items

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. 

"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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