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.

Dame Fiona Caldicott

It was with great sadness that we heard about the passing of Dame Fiona Caldicott. Dame Fiona has left a huge legacy advocating "to ensure no surprises for patients & service users, so they could have clear expectations about how & why their confidential information is used, & what choices they have about this."

The thoughts of Paul Charlton, use MY data Member encapsulate the feelings of many:

"I have just read of Dame Fiona's death. In my own experiences collaborating with her for use MY data and also more recently on the accessible information project I found her kind, open and respectful, unconditionally inviting and encouraging our patient voice."

Our thoughts go out to Dame Fiona's family, friends and colleagues.


Read the Dame Fiona Caldicott tribute on the GOV.uk website

Upcoming events

Date Location Details and registration

3 Mar 2021

Webinar

Show me my data!

Wednesday, 3rd March, 10:00 - 11.30am

The idea of patients being able to see, interact and even make corrections to their own health records has been talked about for many years. But what is the reality about patient accessible, and/or patient-held records, across the UK?

Patient access to GP records is now possible, although not without constraints. However patient access to other levels of data, such as that held in hospital systems, appears to be adopted by systems at a slower rate and without the same national movement and guidance.

Our webinar Show me my data! will hear from organisations who already provide patient access or patient portals and will explore how these organisations fit together, taking a closer look at the NHS App.

We will also ask what benefits are there for patients to hold their data? Have any of the benefits to patients, or to NHS organisations, ever been quantified?

The webinar will include questions from delegates, together with a series of polls and votes seeking delegates’ views on key questions.

Panel Members:
- Sally Rennison – Vice President of Sales, Patients Know Best
- John Parry – Medical Director, TPP
- David Snelson – Member, use MY data.

Our webinar is aimed at patients, relatives and carers, the public and professionals and is open to all who are interested. It is free to attend.

Registration is now open here.

If you would like further information about the webinar please contact Emily Boldison 




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

15 Feb 2021:

NCRI
The National Cancer Research Institute (NCRI) Consumer Forum is seeking patients or carers with a strong interest in cancer research, who want to help improve outcomes and experiences for other patients.

15 Feb 2021:

DHSC New Review
The Department of Health & Social Care (DHSC) has announced a New review into use of health data for research and analysis

15 Feb 2021:

The Lancet
A commentary article published in The Lancet Challenging racism in the use of health data examines how data-driven technologies can exacerbate existing health inequalities.

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

Read about this

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