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.

COVID-19 and patient data

All research for COVID-19 is based on patient data - there's probably no bigger reminder of how essential it is for patient data to be collected and used for research and planning.

This page brings together information on how the data is being used and opinion pieces about the use of the data.

The most up to date UK figures for COVID-19 are available here.

(Publication date 2021-04-01)

Has covid-19 changed researcher behaviour?

Georgina Humphreys, Clinical Data Sharing Manager, Wellcome Trust examines Has covid-19 changed researcher behaviour?

“On 31 January 2020, Wellcome published a statement calling on researchers, journals and funders to 'share interim and final research data relating to the outbreak… as rapidly and widely as possible'.  This statement has now been signed by more than 150 organisations including publishers, scientific institutions and preprint repositories.  Signing a statement is one thing, acting on it something else. Has the research community done enough to share their data openly and transparently? And will these commitments lead to a collaborative and transparent research culture?” 

The article was published on 25 March and is available here

 

 

(Publication date 2021-04-01)

Last year, openDemocracy, “an independent global media organisation” and Foxglove, “a new non-profit that exists to make tech fair” lobbied the Government to release details of the commercial contracts put in place to use patient data to manage COVID-19.  Consequently, the Government published the contracts.  The contracts revealed details of what has been described as an ‘unprecedented’ transfer of personal health information of millions of NHS users to private tech firms.  The contracts published in full were with Google, Faculty, Palantir and Microsoft.

Subsequently, in December 2020, the Government agreed another two-year contract with Palantir.  OpenDemocracy and Foxglove have now published the update We’ve won our lawsuit over Matt Hancock’s £23m NHS data deal with Palantir.

“We raised objections: the initial deals were framed as a short-term, emergency COVID response, but the new contract revealed mission creep well beyond the pandemic.  Government lawyers insisted that citizens have no right to a say in major NHS contracts with big tech. But we believed the public does have those rights. So we sued. 

They’ve pressed pause, committing not to extend Palantir’s contract beyond COVID without consulting the public. There will be no more mission creep without assessing our rights. They have also agreed to engage the public, via patient juries, about whether firms like Palantir are appropriate for a long-term role in the NHS at all.  It’s a major U-turn at a critical moment. The NHS, with its unique trove of structured health data, is powerfully attractive to tech corporations. Palantir and other US tech firms clearly stand to profit from managing or accessing this asset, estimated to be worth £10bn a year.

The NHS datastore is the largest pool of private health data in NHS history, and that raises questions too important to be settled in secret deals. Should it survive the pandemic? On what terms? Should Palantir manage it, or are there more trustworthy alternatives?”

The article was published on 30 March and is available here.

 

(Publication date 2021-01-29)

The forgotten cancer in the fight against COVID-19

The Swallows Head & Neck Cancer Support Charity and DATA-CAN - The Health Data Research Hub for Cancer – have collaborated on a project to assess the impact of COVID-19 on head and neck cancers – The forgotten cancer in the fight against COVID-19 / New data on the impact of COVID-19 on head and neck cancers.

The project is based on research carried out by DATA-CAN and the UCL (University College London) Institute for Health Informatics who collected and analysed ‘real-time’ data from UK cancer centres.  The research was originally published as a pre-print in April 2020.  This was shared with the UK’s four Chief Medical Officers, and the Government’s SAGE [Scientific Advisory Group for Emergencies) and contributed to the decision to restore cancer services.

“Data can help the NHS to understand the impact of COVID-19 on cancer services and help us to respond to make sure that cancer patients receive timely care.”

The research was published on 25 January and is available on the Swallows website here and on the DATA-CAN website here.  Details of the original publication are available here.

 

 

(Publication date 2021-01-26)

Impact of the COVID-19 pandemic on the detection and management of colorectal cancer in England: a population-based study

The research Impact of the COVID-19 pandemic on the detection and management of colorectal cancer in England: a population-based study has been published in The Lancet Gastroenterology and Hepatology.  The lead author is Professor Eva Morris, Nuffield Department of Population Health, University of Oxford.

The research uses data routinely collected by Public Health England and NHS Digital from English hospitals (often called real-world data) throughout 2019 and up to 31 October 2020 and shows that “the number of new diagnoses of colorectal cancer fell by 22% at the height of the first wave of COVID-19 cases and surgical treatment rates fell by 31%.”

“Researchers from the UK Colorectal Cancer Intelligence Hub within the Nuffield Department of Population Health have been working with NHS Digital and a team of experts from other UK universities and hospitals, to undertake analyses to investigate how the diagnosis and treatment of colorectal cancer patients has been affected by the COVID-19 pandemic…By the end of October, the number of new diagnoses, had returned to similar levels to 2019, but there remained a backlog with around 3,500 fewer cancers being found than would be expected, suggesting that many patients have missed out on early diagnosis and lifesaving treatment.”

Patients are acknowledged as the source of the data for the research, using the Patient Data Citation created by use MY data.

The research was published on 14 January and is available here.  The UK Colorectal Cancer Intelligence Hub’s press release is available here.

 

 

(Publication date 2021-01-18)

PIONEER –The Health Data Research Hub for Acute Care – has published a blog about the use of patient data.

Using health data during the pandemic: the need for an accurate risk prediction tool on the frontline is by Dr Frances Grudzinska, Specialist Registrar in Respiratory Medicine and Chair of the Respiratory Trainee Research Collaborative in the West Midlands.

“As a group of respiratory trainees, and in discussion with our patients, we decided to harness the power of routinely collected health care data, and collaborate together…We used healthcare information that is collected on every person admitted to hospital…This data was then combined across the West Midlands with the help of PIONEER, the HDR-UK Hub in Acute Care...” 

The blog was published on 11 January and is available here.

 

 

(Publication date 2021-01-07)

How is additional information in Summary Care Records being used?

NHS Digital has published the blog How is additional information in Summary Care Records being used?  Tamara Farrar, User Researcher, NHS Digital examined the impact of the additional information added to Summary Care Records (SCRs) under the temporary COVID-19 laws. 

Tamara highlights how including the extra information has improved the health care of prisoners, care home residents and those treated by ambulance crews. She concludes:

“It was overwhelmingly clear from the research that the inclusion of additional information would not only have a positive impact on the health and care workers who are accessing it, but on patients too. Users told me that this change enables them to make more informed decisions, which is critical to ensure that people get the best and safest care.

This piece of work really was a pleasure to conduct and it is so good to know that I have been able to use the evidence collected to enable me to advocate for our NHS workers, and that Summary Care Records are being recognised as the powerful tool that they are. Users have become quickly accustomed to the availability of more information and it is becoming embedded into working practices in a range of health and care settings - the question still facing us though - is how we move forward from March, when the current temporary arrangement comes to an end?”

The blog was published on 17 December and is available here.

(Publication date 2020-12-03)

Does vitamin D protect against COVID-19?

Health Data Research UK (HDR UK) has published the research article Does vitamin D protect against COVID-19? by Claire Hastie, Data scientist in Public Health.

“Claire and her collaborators at the University of Glasgow decided to look more closely at the apparent link between vitamin D and COVID-19.

They used data from the UK Biobank – an extensive study of around half a million people who underwent various tests between 2006 and 2010. The UK Biobank dataset contains a wealth of information about these individuals, including measurements of their baseline vitamin D levels when they first joined the study.

Because the participants in the study gave permission for their data to be linked to other data sets for research purposes, Claire and her team mapped these vitamin D measurements onto COVID-19 testing data and death statistics from Public Health England.”

The article was published on 25 November and is available here.

 

(Publication date 2020-10-01)

HDR-UK supported research helps explain poorer COVID-19 outcomes in certain ethnic groups

An article by Louise Stanley about research via PIONEER, the Health Data Research Hub for Acute Care HDR-UK supported research helps explain poorer COVID-19 outcomes in certain ethnic groups.  The article highlights the positive impact of patient involvement in research.

“Data collated and made accessible for research via PIONEER – the Health Data Research Hub for Acute Care – has allowed researchers to better understand the link between ethnicity, severity of illness and outcomes for hospitalised COVID-19 patients…

The PIONEER team engaged with 302 patients and public members as to the use of health data to improve the care for people with acute, unplanned illness.  A group of patients recovering from COVID-19 specifically joined a working group for this research and supported the use of routinely collected health data to investigate the relationship between poor outcomes and ethnicity. A working group of staff and patients from Black and Asian Minority ethnic groups discussed the results and how they should be shared.” 

The article was published on 02 September and is available here

 

 

(Publication date 2020-09-10)

Supporting the global COVID-19 research effort.

OpenSAFELY and ISARIC 4C have announced that they are “joining up for a series of key analyses to support the global COVID-19 research effort. Power of UK data!...”

OpenSAFELY is the “new secure analytics platform for electronic health records in the NHS, created to deliver urgent results during the global COVID-19 emergency.” The website is here.

ISARIC 4C (Coronavirus Clinical Characterisation Consortium) is “a UK-wide consortium of doctors and scientists committed to answering urgent questions about COVID-19 quickly, openly, and for the benefit of all.”   The website is here.

The announcement was made on 9 September via Twitter.

 

 

(Publication date 2020-08-06)

Follow the Science, Follow the Data: the importance of using real-time data to respond to the effect of the COVID-19 pandemic on cancer

Data Saves Lives has published a blog by Professor Mark Lawler, in his role as Co-Chair of the European Cancer Organisation’s Special Focussed Network on Covid-19 and cancer - Follow the Science, Follow the Data: the importance of using real-time data to respond to the effect of the COVID-19 pandemic on cancer.

“So, if something good is to come out of COVID-19, it should be an acceptance that a mixed approach to data collection and analysis makes sense. There is always going to be a need for the most robust accurate, ‘clean’, datasets collected and analysed over significant periods of time – but we also need to embrace rapidly-accessed, real-time data that shows us what is happening in the here and now so that we can use it to make rapid informed decisions that positively influence patient care.”

The blog was published on 20 July and is available here.

Data Saves Lives is “a multi-stakeholder initiative with the aim of raising wider patient and public awareness about the importance of health data, improving understanding of how it is used and establishing a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe.”  Details of the organisation and its work are here.

 

(Publication date 2020-07-30)

The Control of Patient Information Regulations (COPI) extension

The Control of Patient Information Regulations (COPI) allow the processing of confidential patient information without consent, as long as certain conditions are met.

Due to the need to share data to manage COVID-19, the Regulations were changed in March.  The Secretary of State (SoS) issued four notices requiring NHS Digital, NHS England and Improvement, all healthcare organisations, Arm’s Length Bodies, Local Authorities and GP practices to process confidential patient information for purposes related to COVID-19. 

The notices were due to expire on 30 September 2020.  The SoS has recently confirmed the continuation of the COPI notices, until 31 March 2021.  The amended notices will be available on Gov.uk “soon.”