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

27 Sep 2022

Title: Does the NHS sell my data?
Date: Tuesday 27 September 2022
Time: 2.00-5.00pm (including a 15 minute break)

“NHS patient data to be made available for sale!”

“NHS shares English hospital data with dozens of companies!”

“NHS data grab!”

Just what is the NHS doing with our data? What are the facts behind these headlines? 

Our next FREE webinar is the opportunity for you to find out!

Our webinar 'Does the NHS sell my data?' will explain the reality behind the NHS ‘selling’ our data, explore and explain “cost-recovery” models, and consider how the NHS might best exploit our data as an asset to add value to our care and to research.

This webinar will take a long hard look at these issues, as requested by many of our members. We have secured nine speakers to offer a range of perspectives and real-life examples, from those “selling” and those “buying” our data and from those collecting and storing it, and from all four nations in the UK

The event will be chaired by use MY data member Debbie Keatley, with plenty of opportunities for you to ask questions and make comments.

Registration is now open for what we know will be a very popular event, but places are limited. Book now to avoid disappointment.

Speakers:

Jo Gumbs – use MY data Advisory Group Member
Jo is a use MY data Advisory Group Member. Jo will challenge the other speakers on how they can address the concerns of patients and the public.

Michael Chapman – NHS Digital
NHS Digital are the people who store our data in England. At any time, NHS Digital has around 1,000 active data sharing agreements (published in the NHS Digital Data Uses Register) and the organisation receives a similar number of new applications or requests for amendments each year. Running this process incurs a cost. Michael will talk about how data held by NHS Digital is being used to improve health and social care and the current approach to recovering the costs to the NHS of managing these applications and making data available to users for the benefit of health and social care.

Claire Bloomfield & Kelly Lin – NHS England
As well as improving care now, using high quality data allows innovators and researchers to develop technologies and techniques that will improve patient care in future. But it costs money to collate and clean this data and to provide it in secure environments for analysis. Kelly will discuss NHS England’s current thinking around how to support Research and Development (R&D) whilst also making sure that there is value coming back for the NHS.
There is a new joint funding package of up to £200 million between NHS England and NHS Improvement, Department of Health & Social Care and Department for Business, Energy & Industrial Strategy. This will fund investment in NHS data infrastructure to help put the NHS in the driving seat of data-driven research and innovation. Claire will discuss how this will help  accelerate key pieces of work already underway across the NHS, including moving from data-sharing to data-access, creating and using Secure Data Environments and Trusted Research Environments.   

Phil Booth – MedConfidential
With the Government’s commitment to end the dissemination of patients’ data, and with all data access for purposes beyond patients’ individual care taking place by default in Trusted Research Environments or their ‘Five Safes’ equivalent, the question will not be so much about “selling” data so much as who pays for any additional processing power required, and what public value is generated. Phil will talk about what he believes needs to be fixed to gain public trust.

David Ford – SAIL Databank
The SAIL Databank has been able to grow though a mixture of core support from Welsh Government; grants from academic funders, such as the ESRC; and from cost recovery charges levied on researchers wanting to access the data within SAIL.  David's talk will provide further detail of this model and discuss some of the issues that SAIL has wrestled with over the years to make sure it remains sustainable but also fully accountable to the public.

Roger Halliday – Research Data Scotland
Roger will discuss Research Data Scotland's (RDS) pricing and how it is dependent on datasets requested and the level of assistance required and how all results from research conducted through RDS must be capable of being published for the public benefit.

Vicky Chico – Office of the National Data Guardian
The narrative around NHS data grabs and the NHS selling data does not sit well with the expectation that public benefit should be driving decisions about uses of health and care data. Vicky will talk about their public dialogue work in which they found that people were readily prepared to recognise that a benefit to the health system broadly was a public benefit. The feeling that the NHS should receive something in return where it provides data for an initiative that produces profit, is a common theme in the literature exploring public attitudes in use of data collected through health and care. 

Geoff Hall – Leeds Teaching Hospital Trust
Geoff will talk about how Leeds Teaching Hospital Trusts/University of Leeds have developed ways of working for mutual benefit, so the Trust learns more from the data it holds, to improve care, efficiency and outcomes. Such partnerships with outside organisations are often overlooked but are increasingly important to the way the NHS runs and the ways that individual Trusts improve their services. 

 




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

10 Aug 2022:

Patient data strategy
use MY datas response to the Governments strategy for using patient data in England is now complete. It will be shared with NHS England.

10 Aug 2022:

Bennett Institute
The Bennett Institute, which sits within The Nuffield Department of Primary Care Health Sciences, has published Bennett Insights: An Overview of UK Data Policy Developments by Jess Morley

28 Jul 2022:

NHS Digital
Lets talk GP patient information is NHS Digitals call for wide ranging public perspectives on the GP Data for Planning and Research Programme GPDPR

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