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 |
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15 Jul 2022 | use MY data Educational “Drop-in” SessionDate: 15 July 2022, 13.00-14.00Platform: ZoomTopic: What’s in the new NHS Data Strategy, how does it reflect our own thoughts, and what do you think?On 13 June the Department of Health & Social care in England published the new Data Strategy; “Data saves lives: reshaping health and social care with data”. The Strategy “sets out ambitious plans to harness the potential of data in health and care in England, while maintaining the highest standards of privacy and ethics.” At or next Educational Drop-In Session we will be looking at the contents of the Strategy, highlighting and discussing the key areas of interest to use MY data Members, flagging good point, bad points, any areas of concern and any things which we think are missing. As with all our Education sessions, we will be limiting the numbers to 50, to try to keep the session as a dialogue and ensure they are interactive. Whilst the Strategy only covers England, the session should also be of interest to those Members outside of England. In fact it would be very helpful to bring your voices to the table to think about the overall UK perspective, where there are problems which are best addressed at the UK level, and where there are exemplars outside England which need to be recognised. You can read the Strategy here: Registration is now open here and will remain open until the start of the session. However, as places are limited to 50, these will be available very much on a first come, first served basis, so if you are interested you are encouraged to register early.
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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 hereThe citation has been mandated, adopted or used by:
PHS
Public Health Scotland (PHS) has published General practice disease prevalence data visualisation, which is the first release from PHS using the Scottish Primary Care Information Resource (SPIRE).
UCL
University College London (UCL) has published Views on the Creation of an NHS Donated Free Text Databank for Research which reports on stakeholder views
BMJ Paper
The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement
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.
"This work uses data provided by patients and collected by the NHS as part of their care and support"
Our work to examine what information is available to patients in GP Practices about the National Data Opt out
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
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.
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.
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.
"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
"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