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 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.

 

 

(Publication date 2020-05-29)

Research and use of healthcare data in uncertain times.

An article from Annmarie Naylor, Director of Policy and Strategy at Future Care Capital – Research and use of healthcare data in uncertain times.

“It is, perhaps, understandable that aspects of our data-driven efforts to tackle the emergency whilst being ‘led by the science’ should have courted controversy: that we live in inherently uncertain times seems, at times, the only real certainty and uncertainty has a distinct tendency to give rise to anxiety.

From impatience with gaps in our understanding about the people affected by COVID-19 and impacting whether, when and how to lift various aspects of the recent lockdown, to concerns about the use of data by people leading and involved in everything from pandemic modelling efforts to delivering the UK’s ‘track, test and trace’ capability, healthcare data is headline news.

How are we to build and maintain public trust in its use without applying (too forceful) a brake on research, innovation and the goal of supporting improved care against this unprecedently ambiguous backdrop?”

The article was published on 21 May and is available here.

 

 

(Publication date 2020-05-22)

COVIDENCE UK Study

COVIDENCE UK Study has been launched to investigate how lifestyle factors might influence the risk of catching the COVID-19 coronavirus, the severity of symptoms, speed of recovery and any longer-term impacts.  

The study is a collaboration between Queen Mary University of London, Swansea University (SAIL Databank and National Centre for Population Health and Wellbeing Research), Health Data Research (HDR) UK, King’s College London, The London School of Hygiene and Tropical Medicine, The University of Edinburgh and Queen’s University Belfast.

“We are asking people aged 16 years or older, from all parts of the UK and from all walks of life, to sign up and fill in an online questionnaire with details about their lifestyle and health.

Participants will then be contacted every month to check if they have developed any symptoms of coronavirus disease, and to ask some follow-up questions about participants' more general health and social circumstances.

The data we collect will be analysed in order to:

  1. advance understanding of risk factors for coronavirus disease among UK adults
  2. find out how quickly people recover from coronavirus disease and whether there are any long-term complications of this illness
  3. evaluate the impact of coronavirus disease on the physical, mental and economic wellbeing of the UK population
  4. establish a platform for future research on coronavirus disease in the UK.”

Full details and the link to the study are available here.

 

 

 

(Publication date 2020-05-22)

Data Provision Notice GPES Data for Pandemic Planning & Research (COVID-19)

NHS Digital has published details for General Practice data to be shared in support of vital planning and research for COVID-19 purposes - Data Provision Notice GPES Data for Pandemic Planning & Research (COVID-19)

This covers England only, with NHS Digital acting under instruction from the Secretary of State for Health and Social Care under section 254 of the Health and Social Care Act 2012 (2012 Act) to establish and operate a system for the collection, analysis and dissemination of data for COVID-19 purposes under the COVID-19 Public Health Directions 2020 (COVID-19 Direction).

All GP Practices in England are legally required to share data with NHS Digital for this purpose under section 259(1)(a) of the 2012 Act.

In the update, NHS Digital notes that “data will be extracted as a snapshot in time extract on the initial collection. A subsequent fortnightly extraction will then continue until the expiry of the COVID-19 Direction. This is currently 31 March 2022 but will be reviewed in September 2020 and every six months thereafter. The frequency of the data extraction may change in response to demand.”

The Data Provision Notice was published on 14 May and is available here.

The guidance also include details of the legal notices issued by the Secretary of State under Regulation 3(4) of the Health Service (Control of Patient Information) Regulations 2002 (COPI), which were published on 20 March and are available here.

 

 

(Publication date 2020-05-22)

COVID-19, Cancer and Comorbidities: A Deadly Triumvirate

A blog COVID-19, Cancer and Comorbidities: A Deadly Triumvirate from Professor Mark Lawler, Health Data Research UK Associate Director.

"We believe that countries across the world need to rapidly understand how the emergency is adversely affecting cancer outcomes and act accordingly, otherwise we risk adding cancer with associated underlying health conditions to the escalating death toll of the COVID-19 pandemic. We must recognize that people with cancer with comorbidities need to be considered as an extremely vulnerable group of patients and that their care is managed appropriately and in a timely fashion…This cancer intelligence is crucial to how we best serve our cancer patients, both now but even more crucially in the COVID-19 recovery phase. Data can really save lives, but only if we can access it in “real-time” and use it intelligently."

The blog was published on 19 May and is available here

The blog follows Professor Lawler’s study Delineating the adverse impacts of the COVID-19 pandemic on patients with cancer and cancer services which was published on 13 May and is available here.

 

 

(Publication date 2020-05-22)

What ethical principles are guiding app development over time?

Under the heading What ethical principles are guiding app development over time? the NHS has published letters between the Chair of the Data Ethics Board for the App and the Government.

The letter from Professor Sir Jonathan Montgomery, Chair of the Ethics Advisory Board, sets out the “Board’s key principles for an ethical and effective COVID-19 contact tracing app”.

“We are aware that work to develop the app is progressing at pace and a first rollout is planned imminently. It is vital that the speed at which the app is, understandably, being developed does not undermine the importance of scrutiny or the need for transparency. Similarly, it is important that in the desire to maximise take-up of the app, commitments are not made to citizens which are then reversed at a later date. This would profoundly damage public trust.”

Outlined in the letter are “Six principles to ensure that the CV19 contact tracing app is ethical”.

The letter was sent on 24 April.

The Government’s response is dated May 2020 and highlights:

“The continued oversight by the EAB is crucial. And I am pleased that we can adhere to the principles you have set for us. At a minimum we will:

  • Ensure the protection of user data is central to our approach
  • Make the app voluntary to download and use
  • Be clear about the decisions made in the app’s development
  • Communicate in clear and plain language
  • Only roll out the app if we are confident it will help.”  

The letter goes on to set out “the full detail of these and other commitments.”

Links to both of the letters are available here.

 

 

(Publication date 2020-05-15)

'We’re all in this together’ – what does this mean for COVID-19 research?

In her blog ‘We’re all in this together’ – what does this mean for COVID-19 research? Katherine Wright examines how public/patient engagement is often set aside during times of crisis.

“In recent conversations I’ve been dismayed to hear the argument that “there isn’t time to do engagement” in the UK given the urgency of much COVID-19 research. This impression has been reinforced by the recent #WhyWeDoResearch tweetchat involving NHS staff, patients and academics across the UK, where it was reported that: “nearly all patients said that Public and Patient Involvement (PPI) had come to a close”.

If it’s not acceptable to argue ‘there isn’t time to do community engagement’ in recent Ebola outbreaks in low resource settings (and all the evidence showed it was both possible and essential for successful implementation) – then it certainly isn’t acceptable to argue that there isn’t time to involve patients and the public in UK COVID-19 trials. Indeed, the existence of well-established PPI networks around the UK, the fact that COVID-19 potentially affects us all, and the ready availability of many different forms of remote discussion / conferencing facilities should give us a flying start.”

The blog was published on 6 May and is available here.

 

 

(Publication date 2020-05-15)

Factors associated with COVID-19-related hospital death in the linked electronic health records of 17 million adult NHS patients.

A paper with preliminary results from the OpenSAFELY collaborative - Factors associated with COVID-19-related hospital death in the linked electronic health records of 17 million adult NHS patients.

Information from the press release:

“Academics at the University of Oxford and the London School of Hygiene & Tropical Medicine (LSHTM), working on behalf of NHS England, and in partnership with NHSX, have analysed the pseudonymised health data of over 17.4 million UK adults to discover the key factors associated with death from COVID-19.

This is the largest study on COVID-19 conducted by any country to date, and therefore gives the strongest evidence on risk factors associated with COVID-19 death.

The study linked data about patients that had been hospitalised with Covid-19 with data held in primary care records processed by TPP. This was carried via the OpenSAFELY analytics platform, a new secure mechanism which allowed the GP records to be linked where they are stored for individual care. This minimises the security risks associated with transferring and storing data elsewhere, to deliver analyses quickly and safely while preserving patient privacy. All identifiable data remains in control of the NHS and data is pseudonymised before it can be accessed by researchers.”

The paper was published on 7 May and is available here.

 

 

(Publication date 2020-05-07)

NHSX - Bulletin and guidance

NHSX has published its COVID-19 Digital Transformation Bulletin, which has updates on the App alongside other initiatives to manage COVID-19.

 App launch and testing

NHSX “has launched the NHS COVID-19 App to support the first phase of an integrated contact tracing and testing programme on the Isle of Wight, as announced by Secretary of State for Health and Care Matt Hancock on 4 May 2020. This programme will play a central role in how the UK manages the rate of COVID-19 transmission alongside restrictions on social distancing…The NHS COVID-19 App is currently only available for use on the Isle of Wight. We will share more details about national rollout over the coming weeks.”

The National COVID-19 Chest Imaging Database (NCCID)

Medical chest images key to new AI initiative in fight against COVID-19‚Äč…The first centralised UK repository of chest X-ray, CT and MRI images is being established to help improve understanding of COVID-19 and support treatment of the disease. The National COVID-19 Chest Imaging Database (NCCID) is a joint initiative established by NHSX, the British Society of Thoracic Imaging (BSTI), Royal Surrey NHS Foundation Trust and London-based AI technology specialist Faculty.”

Improving access to medical record and information

“NHSX and NHS Digital are improving the access that doctors, nurses and other authorised health and care professionals have to medical records and information. This will ensure staff can more safely treat and advise patients who are not attending their usual GP practice, have called NHS 111 or who are attending hospital or other healthcare settings to receive direct care. To achieve this temporary changes are being made to GP Connect and the Summary Care Record which you can read about on our website. Last week we wrote to NHS health and care staff, core system suppliers and stakeholders about these changes and what they need to do.”

The bulletin was published on 6 May and is available here.

 

(Publication date 2020-04-30)

UK patients and the NHS to benefit from new health data initiatives that will address major health challenges.

Health Data Research UK (HDR UK) has launced innovative data initiatives, with the announcment UK patients and the NHS to benefit from new health data initiatives that will address major health challenges.

“The initiatives aim to ensure patients receive the best possible care and services, benefiting some of the most vulnerable patient groups who are at greatest risk of COVID-19 by supporting the better use of data and analytical tools.

The initiatives include the addition of two new health data research partnerships to the Health Data Research UK network – one in the  North of England and one in the South-West of England.  These new partnerships boost the depth and breadth of expertise in health data research and innovation and complement the existing outstanding talent in Health Data Research UK’s sites and hubs.”

The launch was announced on 29 April and full details are here.