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

30 Mar 2023

Artificial Intelligence and Patient Data: what's the reality?

Thursday, 30 March 2023, 10:00 to 11:00

Online

There has been huge interest in Artificial Intelligence (AI), in particular how to maximize the benefits of AI for healthcare, while minimizing its risks and avoiding its pitfalls.  But aside from theory, guidelines and principles, what practical progress has been made in the use of AI to improve patient care and outcomes?  And whilst we may have seen AI being increasingly used to automate the reading of digital medical images, how has AI been used with other patient data? 

Our next webinar will attempt to demystify AI, beginning with an outline of what is actually meant by AI.   Our speakers will then demonstrate not just how AI could improve patient outcomes and healthcare delivery, but will bring this to life by hearing some practical real-world examples including how the patient voice can be involved effectively.  Finally, our speakers will outline the hurdles which need to be overcome to realise the potential of AI.

The webinar will take place on the 30th March (10-11.30am) and is free to attend. To register to attend please follow this link. As with all or webinars, a substantial part of the webinar will be for Q&A from delegates to the speakers and open discussion.

 

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

17 Mar 2023:

DataLoch - Engagement opportunity
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17 Mar 2023:

Nothing about us without us - CRUK
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9 Mar 2023:

NCRI Working/Study Groups
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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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