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 2021-01-18)

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.”

 

(Publication date 2020-07-13)

Ensuring ethnic diversity in COVID-19 research

The National Institute for Health and Research (NIHR) has published the blog Ensuring ethnic diversity in COVID-19 research by Professor Kamlesh Khunti, Director and Professor Azhar Farooqi, Clinical Director, who are both at the Centre for BME Health, University of Leicester.

The blog includes a section on including patients and the public:

“…We also wanted to find out directly from people from BAME groups about what the barriers in engagement in research were, and how they can be addressed.  So we engaged with patients and members of the public from local BAME groups to produce a third video, where they share thoughts and suggestions about taking part in COVID-19 research. 

The people we spoke to gave their perspectives on how to meaningfully involve BAME groups in research, such as keeping participants informed during and after the research study. The key message that came through from everyone we talked to was that people from BAME groups need to be engaged in a research project from the very beginning, in the spirit of true collaboration and partnership...”

The blog was published on 1 July and is available here.

 

 

(Publication date 2020-07-06)

Why the public need a say in how patient data are used for Covid-19 Responses.

The International Journal of Population Data Science (IJPDS) has published the open letter, from a range of signatories - Why the public need a say in how patient data are used for Covid-19 Responses. 

“…The key premise of the consensus statement is that the public should not be characterised as a problem to be overcome, but a key part of the solution towards establishing socially beneficial data-intensive health research for all. This resonates in the current context where it is important to avoid caricaturing “the public” or speculating on how “the public” will respond to particular measures or data practices, but rather to engage diverse publics in consequential deliberation to inform and shape policy responses and data practices…”

The letter was published on 23 June and is available here, along with the list of signatories.

 

(Publication date 2020-06-18)

Data in the time of Covid-19

Understanding Patient Data (UPD) has published the blog Data in the time of Covid-19 written by Communications Officer, Grace Annan-Callcott, in collaboration with Natalie Banner and Tom Harrison.

“To meet the urgent need created by the pandemic for access to accurate, timely data, NHS organisations have rapidly formed new partnerships. These partnerships have given third-party organisations - including  academics and private companies - access to NHS-held data, to help assess and analyse the spread of Covid-19. 

Although developed in a period of crisis, the infrastructures, partnerships and new norms established now could be with us for a long time. As we start to emerge from the initial emergency, it's important to consider the impact of these decisions on the future of health data in the UK….

In this moment of increased public interest, there’s an opportunity to embed trustworthy governance and decision-making in how NHS-held data is managed. But we have not got off to a good start in England and trust is fragile. Decisions made now will shape the role of data in providing care in the future. We need to make sure it works for everyone.”

The blog was published on 16 June and is available here.

 

 

(Publication date 2020-06-12)

An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team

This is patient-led research published under the heading An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team.

“The goal of this research is to capture and share a bigger picture of the experiences of patients suffering from COVID-19 with prolonged symptoms using a data driven approach. The survey content and research analysis are “patient-centric,” conducted through participatory type research. Survey questions and symptoms were aggregated and curated by patients themselves with expertise in research and survey design. Analysis was also conducted by patients themselves with expertise in both quantitative and qualitative data analysis. This approach is especially important for COVID-19 because patients experiencing symptoms are in need of timely research and content relevant to them that is not currently available due to the novelty of this virus.”

The survey was international with patients contributing “from the U.S. (71.7%), followed by the U.K. (12.7%), Netherlands (4.2%), Canada (1.9%), Belgium (1.7%), and France (1.4%). Other countries represented include Sweden, Ireland, Germany, Belgium, Scotland, Italy, Russia, Spain, South Africa, Greece, and India.”

“Analysis was also conducted by patients themselves with expertise in both quantitative and qualitative data analysis.”

The report was published on 2 May and is available here. 

Details about the Body Politic COVID-19 Support Group are here.

 

(Publication date 2020-06-12)

Why are we centralising GP data to support research during the pandemic?

NHS Digital has published a blog by Peter Short, Clinical Lead, GP Data, NHS Digital - Why are we centralising GP data to support research during the pandemic?

“Last week, with the support of the British Medical Association (BMA) and the Royal College of General Practitioners (RCGP), we issued a Data Provision Notice to GP practices in England to inform GPs that we are establishing a central data collection of GP data for coronavirus research and planning purposes during the virus outbreak.”

The blog covers why and how the data is being collected and shared, the purpose of its use and the legal basis.

The blog was published on 22 May and is available here.

 

(Publication date 2020-06-12)

Sweeping aside patient involvement during pandemic was too easy.

The Health Service Journal (HSJ) has published an article by Rachel Power, CEO, the Patients Association - Sweeping aside patient involvement during pandemic was too easy.

“In responding at scale and pace to coronavirus – discharging patients, cancelling operations, changing how patients access services – the NHS avoided becoming overwhelmed.  However, changes were delivered without allowing the patients affected a say. Given the emergency, that was probably necessary and people were largely supportive…

Just as patients were largely absent as active participants in either care choices or service design in the long-term plan, we’ve just seen how shallow the roots of patient involvement in the NHS have always been: sweeping it aside wholesale to manage covid-19 proved, perhaps, a little too easy. 

If, as it resets itself, the NHS isn’t to accidentally erase patient involvement, it needs to involve patients meaningfully from the outset. 

To deliver a new normal that serves patients we must grab this opportunity to bake patient involvement into new structures, processes and cultures within the NHS…

If, as it resets itself, the NHS isn’t to accidentally erase patient involvement, it needs to involve patients meaningfully from the outset.  This means giving patients actual roles in the actual decision-making process.”

The article was published on 5 June and is available here - to those for those who are subscribers.  We have written to the HSJ asking their permission to circulate the article to the use MY data membership.

 

(Publication date 2020-06-12)

Under pressure, UK government releases NHS COVID data deals with big tech

openDemocracy, “an independent global media organisation” and Foxglove, “a new non-profit that exists to make tech fair” have been lobbying the Government to release details of the commercial contracts put in place to use patient data to manage COVID-19.  The Government has now published the contracts.

Mary Fitzgerald of openDemocracy and Cori Crider of Foxglove have written the article Under pressure, UK government releases NHS COVID data deals with big tech.

“Hours before facing court proceedings from openDemocracy over its massive NHS COVID-19 data deal with private tech firms, the UK government has caved to pressure and released all the contracts governing its deals with Amazon, Microsoft, Google, and controversial AI firms Faculty and Palantir.

The contracts, released to openDemocracy and tech justice firm Foxglove today, reveal details of what has been described as an ‘unprecedented’ transfer of personal health information of millions of NHS users to these private tech firms.”

The contracts published in full are with: Google, Faculty, Palantir and Microsoft.

The article was published on 5 June and is available here.

 

 

(Publication date 2020-06-04)

Vital data and research projects to tackle COVID-19 searchable via new developments in online health data portal.

Health Data Research UK (HDR UK) has announced the next phase of its Gateway under the heading Vital data and research projects to tackle COVID-19 searchable via new developments in online health data portal.

“Health Data Research UK has launched the next phase of the Health Data Research Innovation Gateway–a portal that allows researchers and innovators to find information about more than 440 health datasets and request access to them, including for research into the COVID-19 pandemic.

This includes data from the COVID-19 Symptom Study, led by King’s College London and health science company ZOE, which has over 3.5M users who are regularly reporting on their health and symptoms. The data from their Symptom Tracker app is proving vital for research and influence on health policy, evidenced by the recent addition by the UK Government of loss of sense of smell and taste as a recognised symptom of COVID-19. The study is also supported by BREATHE–The Health Data Research Hub for Respiratory Health.

Another new addition to the Gateway is the national chest imaging dataset, which contains data on x-rays, CT and MRI images from hospital patients across England –data that can be used for responsible and ethical research to inform the response to COVID-19.”

The announcement was made on 2 June and the details are here.