A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis

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 what events we run

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

use MY data workshop: Patient data - balancing access and protection

7 May 2019, London

Patient data saves lives and improves outcomes and yet researchers are struggling to access patient data. This workshop will bring together data access bodies - the controllers/guardians of patient data - for a collective discussion. Our aim is for the patient voice to help the organisations find solutions. Registration is now open.

Link here

Saving lives & improving treatment - why sharing patient data is good

16 May 2019, London

use MY data are taking part in this event, being organised by St Giles Medical. This is St Giles Medical hold a second patient-orientated conference, this year taking place in London on Thursday 16th May 2019. Our session will focus on why sharing patient data is good and will include speakers from use MY data

(Link coming soon)

"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 patient movement. It has been widely adopted by data and research organisations, and recommended for adoption by the major research funders in the UK.

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

.