Mission statement

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.

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. 

"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.

Who we are

  • Our membership comprises:

Members - patient advocates who are either patients, relatives or carers

Associate Members – who are clinicians, researchers, charities, researchers, public & commercial sector workers.  They are united by an interest in sharing healthcare data to improve patient outcomes under appropriate levels of consent, security and privacy.

  • Our Executive Group is drawn from use MY data Members.  The Executive Group defines the priorities, actions and activities of use MY data, representing its Members and advising the Secretariat on the Members’ behalf.  Please visit the Executive Group page here for details about the Executive Group, including current Members.

  • Our Secretariat supports the work of use MY dataThe Secretariat comprises a Head of Programmes & Engagement, Data Adviser and Communications & Media Lead.  These are the only funded roles within use MY data and both roles are part time.

 

 

Our history

Beginnings – Donate Your Data

use MY data began on 09 June 2015 at the National Cancer Intelligence Network conference, in Belfast.

In response to concerns about how the proposed Care.data programme was causing cancer research to stop, patients, carers and relatives gathered together, over a lunch time session.  The session was jointly hosted by Cancer52, Cancer Research UK and the National Cancer Intelligence Network. 

Its focus was on how current cancer patients could help turn their data into the best outcomes for future cancer patients.  ‘Donate your data’ was proposed – an organisation were patients would willingly give their data for this purpose. 

The patients attending the session showed unanimous support for the concept of donating their data. 

Some specific comments & questions:

  • Good examples of proper use and benefit" needed – to help the public understand
  • Need information on the impact of not doing research, as well as knowing impact of what has been done
  • "Patients don’t realise their data is not being used” and “assume their data is being used in right way”
  • The general public don’t understand the value of the data, in the way that cancer patients do. Need the public to understand the bigger picture and how they could be affected in the future.
  • Currently information is not written by patients – this is needed

 

Next stage – Donate Your Data changes to use MY data

A follow-up meeting was arranged, which took place in London on 29 July 2015.  This comprised delegates from the 09 June session, along with representatives from the Brain Tumour Charity, Cancer52, Cancer Research UK, Macmillan Cancer Support and the National Cancer Intelligence Network,

Key themes and results from the workshop were reviewed:

  • Patients should be in charge of their data, because their data is a gift
  • Transparency is essential
  • Patients trust patients (not the Government)
  • This is not about opt-in/out – it is about data usage

And a key message emerged: Every day lost is another person dying.

The Working Group discussed practical ways forward.  Most felt that the name ‘Donate Your Data’ was not accurate – as cancer patients said their data had been taken, and the focus should therefore be on how their data would/could be used.  Further work, post-meeting led to the name change to use MY data.

Some of the key decisions and actions that emerged from the meeting were:

  • Host a public workshop on patient data issues in the Autumn of 2015
  • Encourage the practice of publications stating that the work was only possible because of the use of patient data.  This led to the Data Citation and further details about its development are here - http://www.usemydata.org/citation.shtml
  • Have a UK focus
  • Provide a set of examples of ‘what data does’, highlighting where uses of data have changed practice
  • Not have a hierarchy or corporate structure.

 

use MY data evolves

From its beginnings in 2015, use MY data has evolved through a rolling programme of engagement and communications.  We host at least two patient data workshops each year, alongside a programme of campaigns, networking, presence at national events.  We are increasingly being asked to 1) advise other organisation about patient engagement and 2) engage with organisations who hold patient data.

Membership

From the initial beginning of patients, relatives and carers affected by cancer, membership of use MY data expanded in two ways.

  • Membership was widened to include patients, relatives and carers from all disease areas
  • Associate membership was created. Recognising that many professionals wish to support our work, we created this additional layer of membership.  Associate Members are clinicians, researchers, charities, researchers, public & commercial sector workers.  They are united by an interest in sharing healthcare data to improve patient outcomes under appropriate levels of consent, security and privacy.

 

 

Status and Funders

Our Legal Status

use MY data is an independent movement of patients, relatives and carers.  In October 2022 we established ourselves as a not for profit company limited by guarantee, allowing us to receive funding directly allowing us to manage contracts and employ staff directly, though some of our Secretariat remain hosted in academic institutions.  

We are extremely grateful to present and past funders. We have never been influenced or steered by our funders – they have all given us free reign to do as we see fit with their funding, with the work of use MY data being defined by its Members and the Advisory Group, for the benefit of patients. 

The use MY data Secretariat roles are:

  • Coordinator (funded by NHS England, hosted by the Leeds Institute of Medical Research)
  • Expert Data Adviser (self-funded)
  • Communications & Media role - to be appointed (funded by Cancer Research UK)
  • Business and Administration role - to be appointed (funded by Cancer Research UK) 

 

Our Funding

Our funding comes from different sources:

  • Cancer Research UK are providing funding use MY data for three years from April 2023 to help us expand our work around awareness, trust and support for the use of patient data in research.  This funding will support a new communication & media role, plus a new a business administration role. 
  • NHS England provide funding for the use MY data Coordinator role 
  • Health Data Research UK have provided one-off funding to support the work of use MY data, including running costs, honoraria, travel and meeting costs.  Health Data Research UK also provide meeting facilities and refreshments for our Executive Group and Secretariat to meet.

 

Details of our previous funding and support for our workshops is available here.

Contact us

email: contact@usemydata.org.uk

"the only independent patient movement in the UK focused on patient data"
use MY data is registered as a not for profit company limited by guarantee in England and Wales (14425977)