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.

Upcoming events

Date Location Details and registration

8 Jun 2023

online

use MY data & Westminster Health Forum

Monday, 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 here

The citation has been mandated, adopted or used by:

Noticeboard

4 May 2023:

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.

4 May 2023:

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.

28 Apr 2023:

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.

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. 

Project: The Patient Data Citation

"This work uses data provided by patients and collected by the NHS as part of their care and support"

Read about the development

Project: National Data Opt-out: information to patients?

Our work to examine what information is available to patients in GP Practices about the National Data Opt out

Paper: Recognising patient responsibilities for data

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

Read our article

Project: Campaign for the use of tissue samples

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.

Read more here

Policy: Our stance on Transparency

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.

Read about our position here

Workshop: Improving access to data

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.

Read the workshop summary here

"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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