A movement for patients, relatives and carers Harnessing the patient voice to build confidence in the use of to save lives and improve outcomes

Our projects

Promote individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes, recognising the patient contribution

Read about our projects

Members' voices

Highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all

Hear what our members say

Workshops

Understand the uses of data in healthcare delivery, improvement and research, aimed at improving patient decision making, treatment and experience

See the events we run

Noticeboard

15 May 2019: Summary of the use MY data workshop is now available

14 May 2019: Public engagement on partnership models involving NHS data

27 Mar 2019: A vision for inclusive and transparent health data science in the UK and beyond

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. 

Priority 1: Faster, safer and more transparent access to data for research

We want to help simplify the processes and reduce the timescales for ethical researchers (healthcare professionals, academics and companies) to access the data they need

Priority 2: The National Data Opt-out: Implementing patients wishes

Ensure that the National Data Opt-out is upheld effectively by the 54,000 organisations that it affects so that public confidence is gained and maintained

Priority 3: Highlighting the benefits of data usage

In a world which is largely focused on the risks of data, we work to help reassure the general public that our data is safe AND is being put to good use for public benefit

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 25% of tissue samples which are stored in tissue banks are actually used.

Read more here

Workshop: How to give active control to patients

Exploring the potential and current work which may be underway around the topic of data donation (similar to tissue donation). Begin with a workshop involving key organisations such as NHS Digital.

Read about the workshop here

Workshop: Improving the controls for access to data

Exploring the current controls which are in place, how these protect our data, but also how they may be preventing research from taking place.

Read about the workshop here

Upcoming events

Public Health England & Cancer52 event

22 May 2019,

The event will explore the developments in the production and use of data for rare and less common cancers. Working through the data pathway, leading experts will share insights on data collection processes, how data is used in analysis and research and the impact it can have on services and patient outcomes.

Link 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 provide learning resources for patient advocates on patient data issues, including:

hosting workshops for patients and the public, focussing on topics related to patient data a library of resources of data security, consent narratives from individuals about how collecting, storing and using data can help patients.

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.

Who we are and how we are run

use MY data consists of Members who are patient advocates – either patients, carers or families’ representatives. We also have Associate Members who work for patient organisations, charities, research institutions, public sector and commercial organisations.  Our Associate Members are united by an interest in sharing healthcare data to improve patient outcomes under appropriate levels of consent, security and privacy.

use MY data is overseen/steered by a small Advisory Group, which comprises use MY data members. 

use MY data is supported by the Secretariat, which comprises a Coordinator and Expert Data Adviser.  Details of funders can be found on the funders page

 





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

The citation has been mandated, adopted or used by:

"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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