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 Jun 2023 | online | use MY data & Westminster Health ForumMonday, 08 June, 09:00 to 13:30 Online Westminster Health Forum is hosting Utilising data to drive health and social care service developments and there is an opportunity for a use MY data Member to join the panel alongside our Expert Data Adviser, Chris. We will take part in the session Building public engagement and trust in data use - improving understanding of data collection, enabling access to care and treatment records, and placing patient safety at the heart of strategies for data use. This runs from 10:00 to 11:00, with each speaker having a maximum speaking time of five minutes, followed by 30 minutes of panel questions and answers. The draft agenda is available here.
|
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:
National Disease Registration Service
The National Disease Registration Service (NDRS) has published its Strategic plan, April 2023-March 2024.
The plan covers data collected "on every patient diagnosed with a cancer, pre-cancer or with a congenital anomaly, as well as data on over 1800 rare diseases", which will be "used as actionable evidence to improve population health, service provision, patient outcomes and support research".
The strategy was published on 14 April and is available here.
Data access blog - Scotland
The blog Why public sector data needs to be transformed by Nora Cooke O'Dowd, Programmes and Data Acquisition Director, Research Data Scotland (RDS), follows RDS's recent Public Sector Data Summit and highlights the difficulties in data access for research in Scotland and the RDS's role in addressing this.
"The system of making data available for research is very well established in Scotland, but it is fragmented…Scotland already has excellent data on people, places and business, but barriers to accessing this data quickly and safely can delay valuable research…it takes on average 6 to 24 months to access public sector data for research. The data is sensitive, so it’s right that there are appropriate checks and balances in place…but the application process at present is more laborious and repetitive than it needs to be."
The role of RDS is "to act as an independent organisation, who can listen to all parties and suggest recommendations. We have a remit to provide systems leadership in bringing data organisations, universities, researchers, and public bodies from across the data landscape together, to work as a single system and transform the way data is managed".
The blog was published on 24 April and is available here.
PPV role for Rare Diseases
NHS England's Specialised Commissioning Engagement Team is seeking a Patient and Public Voice (PPV) Partner to fill one of four PPV roles on the Rare Diseases Advisory Group (RDAG). NHS England is seeking "people who have an interest in or are knowledgeable about rare diseases and conditions".
Some key information:
- The RDAG meets online, approximately four times per year, with meetings four-hours long
- An honorarium is offered - £75 per half-day or £150 per full-day, which includes preparation work.
The closing date for application is Wednesday, 07 May with interviews on Thursday, 08 June.
The application information pack is available here and information about the RDAG here.
For an informal chat and/or to obtain further information, please email england.voice-crg@nhs.net.
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