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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27 Sep 2022 | Title: Does the NHS sell my data?
“NHS patient data to be made available for sale!” “NHS shares English hospital data with dozens of companies!” “NHS data grab!” Just what is the NHS doing with our data? What are the facts behind these headlines? Our next FREE webinar is the opportunity for you to find out! Our webinar 'Does the NHS sell my data?' will explain the reality behind the NHS ‘selling’ our data, explore and explain “cost-recovery” models, and consider how the NHS might best exploit our data as an asset to add value to our care and to research. This webinar will take a long hard look at these issues, as requested by many of our members. We have secured nine speakers to offer a range of perspectives and real-life examples, from those “selling” and those “buying” our data and from those collecting and storing it, and from all four nations in the UK The event will be chaired by use MY data member Debbie Keatley, with plenty of opportunities for you to ask questions and make comments. Registration is now open for what we know will be a very popular event, but places are limited. Book now to avoid disappointment. Speakers: Jo Gumbs – use MY data Advisory Group Member Michael Chapman – NHS Digital Claire Bloomfield & Kelly Lin – NHS England Phil Booth – MedConfidential David Ford – SAIL Databank Roger Halliday – Research Data Scotland Vicky Chico – Office of the National Data Guardian Geoff Hall – Leeds Teaching Hospital Trust
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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:
NHS Digital
Lets talk GP patient information is NHS Digitals call for wide ranging public perspectives on the GP Data for Planning and Research Programme GPDPR
House of Commons Library
The House of Commons Library has published Patient health records: Access, sharing and confidentiality
The Kings Fund
Improving children and young peoples mental health services: Local data insights from England, Scotland and Wales
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