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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8 Feb 2021 | Event | The HETT (Healthcare Excellence Through Technology) Reset 2021 conference takes place from Monday, 08 February to Friday, 12 February online. The conference is called Stronger, Together: Uniting the digital health ecosystem to accelerate transformation and improve services and patient care. use MY data has been invited to participate and we are taking part in three sessions. The Seismic Shifts in Management of Patient Data – reflecting on the present and long-lasting impacts of Covid-19
Approaches to adopting Personalised Health Records (PHRs): Empowering patients to manage their care and data
Establishing a patient centric approach to managing data
Full details of the conference and registration are here. The conference is free to attend for “those working in the NHS, independent healthcare provision, the care sector, and the wider public sector”.
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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:
Empowering Citizens
The Digital Health Society has published the policy paper Empowering Citizens ??? The Key to a Successful Digital Health Transformation.
National Disease Registration Service - Webinars
The National Disease Registration Service hosted an Autumn webinar series, which covered seven different patient data topics
NDG New Principle
The National Data Guardian (NDG) for Health and Social Care in England has announced a New Caldicott Principle and guidance on Caldicott Guardians.
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