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

15 Jul 2022

use MY data Educational “Drop-in” Session  

Date:           15 July 2022, 13.00-14.00

Platform:     Zoom 

Topic: 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:

https://www.gov.uk/government/publications/data-saves-lives-reshaping-health-and-social-care-with-data

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.

 




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

30 Jun 2022:

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).

23 Jun 2022:

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

20 Jun 2022:

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

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