The National Disease Registration Service (NDRS) is publishing a series of data stories and asking use MY data to comment on each one, bringing a patient perspective to the use of patient data.
The first data story focusses on the Registration of Complex Rare Diseases – Exemplars in Rheumatology (RECORDER) project, highlighting how patient data has been used to understand how people with rare autoimmune diseases have been affected during the COVID-19 pandemic.
David Snelson, Advisory Group Member, reviewed the data story and commented:
“This research is very important for people with a rare disease. When someone is diagnosed with a rare disease, they are often shocked and worried. Research like this helps clinicians to provide the right treatment and to advise the patient on how to manage their condition. Often people with a rare disease join a patient support group and research like this can also help the group to advise its members.
This study shows what can be done when trusted organisations use our health data. When data from a whole population is used and different parts of our health data are linked together, we get a better picture of the most important issues.”
The data story was published on 07 April and is available here.
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.
Covid: The London bus trip that saved maybe a million lives by James Gallagher, Health and Science Correspondent, focuses on the Recovery Trial (Randomised Evaluation of Covid-19 Therapy) - its origins, aims, work, outcomes to date and what made it so different to a standard clinical trial.
The contribution of patients, as well as researchers and clinical staff is emphasised:
“Ten-year-old Aiden Temple, who had a rare immune disorder after catching the virus, just wanted to make a difference. "It was very scary, but I felt quite proud if I could help other people get better quickly," he said.
It also took the efforts of thousands of doctors and nurses, as well as a hard-core team of about 20 scientists in Oxford, to collect and analyse the data.”
The article was published on 25 March and is available here.
Researchers at Queen’s University Belfast are using rapidly available data to monitor the Impact of COVID-19 on cancer diagnosis.
The research data are “sourced from the four NHS pathology laboratories in Northern Ireland (Belfast, Altnagelvin, Antrim, Craigavon), which are usually provided to the NI Cancer Registry on a monthly basis.”
The results are published on the Northern Ireland Cancer Registry website. The overview page, which contains a link to the reports (updated with the latest, for February 2021), is available here.
Public Health England (PHE) has published the blog Behind the scenes: Expanding the COVID-19 dashboard by Julian Flowers, Consultant in Public Health and Director of the Eastern Knowledge and Intelligence Team, Public Health England.
The blog was published on 22 March and is available here.
The BBC’s online numbers and statistical series More or Less has published the episode In praise of Covid Data. The episode examines the use of patient data to manage COVID-19 in the UK and America with the observation “One of the side effects of COVID is that people have become used to dashboards full of statistics.”
“It’s over a year since a global pandemic swept the world which caught many countries unprepared. In the beginning, one key problem was that the authorities and the public wanted data on how bad the problem was - how many cases of Covid 19 were there? How many tests were being carried out? How many people were in hospital? On this week’s programme we talk to Clare Griffiths from the UK’s coronavirus dashboard and Alexis Madrigal from the Atlantic Magazine’s Covid Tracking Project in the US.”
The episode was published on 27 March and is available here.
NHS Digital has published the blog Finding the vulnerable before COIVD does by Lee Gathercole, Technical Architect, NHS Digital.
“When the University of Oxford developed an algorithm to predict those at higher risk of dying from COVID-19, we had a challenge: to securely integrate this risk assessment tool into our data systems to identify exactly who these people were.”
Lee also looks ahead to the next phase of the work, which will “provide a central view of the processed data for a local clinician to review. We have an opportunity here to provide a much richer level of data than previously available in the Summary Care Record or the GP record, which will help clinicians make informed decisions about the patients they care for.”
The blog was published on 29 March and is available here.
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.
The study Uptake and comparative safety of new COVID-19 vaccines by age, sex, region, ethnicity, comorbidities, medication, deprivation, risk level and evidence of prior COVID infection will use multiple patient datasets for societal benefit.
“The successfully awarded research project through a rapid funding call by Health Data Research UK, Office for National Statistics and UK Research and Innovation (UKRI) is led by Julia Hippisley-Cox (University of Oxford). The research project is building on existing UKRI and National Institute for Health Research (NIHR) work to use national data to answer this key COVID-19 research question.”
“…if there are population groups who are not having the vaccine, then this could create or worsen inequalities in health. Knowing about these patterns means interventions can be designed that could help increase vaccine uptake to improve this…”
The study overview is here.
An accompanying lay summary from Health Data Research UK is here.
The blog Fighting the Pandemic With Data: Why cancer data has never been so important by Sarah Miller, Head of Informatics, East of England Cancer Alliances focusses on the role of analysts, data scientists and informatics experts. Sarah highlights the use of different datasets and the speed at which developments took place, which was only possible due to a truly collaborative way of working.
“During COVID-19, with our Level 4 Critical Incident Cancer Clinical Cell, I developed a brand new cancer data collection template, to bridge the gaps in our knowledge about cancer services – ordinarily, this would take 6-12 months to develop and embed; instead it took around four weeks!”
Sarah concludes: “The patients and their data are at the heart of everything we do. We will continue to fight this pandemic for them, using their invaluable health data.”
The blog was published on 10 March and is available here.
ICODA, the International COVID-19 Data Alliance, has contacted use MY data to highlight the publication of its Community Engagement and Patient and Public Involvement Report and Proposed Strategy. This is the latest in ICODA’s patient and public involvement work programme.
ICODA is seeking feedback on two key points:
- “How can we improve on our proposed strategy – this could be additional recommendations, ideas for implementation or more general feedback
- With whom do you think we should be engaging to help us build and deliver our strategy?”
The strategy was published in February 2021 and is available here.
An article in the International Journal of Population Data Science (IJPDS) Leading by Science’ through Covid-19: the GDPR & Automated Decision-Making discusses the creation of the NHS Covid-19 Data Store, the uses of the data using automated decision techniques and the implications within the General Data Protection Regulations (GDPR).
“The initiative illustrates the difficulty of relying on automated processing when making healthcare decisions under the General Data Protection Regulation (GDPR).
The end-product of the store, a number of ‘dashboards’ for decision-makers, was intended to include models and simulations developed through artificial intelligence. Decisions made on the basis of these dashboards would be significant, even (it was suggested) to the point of diverting patients and critical resources between hospitals based on their predictions.”
The article was published on 24 February and is available here.
BREATHE - the Health Data Research Hub for Respiratory Health – has announced a New partnership set to unlock real world evidence health data, boosting research into COVID-19 and respiratory conditions.
The partnership is with Savana, “leaders in Deep Real World Evidence clinical research” and will “accelerate the use of data from de-identified EHRs [Electronic Health Records] to monitor disease progression and outcomes in UK patients hospitalised with COVID-19 as part of the international BigCOVIData study.
The partnership was announced on 10 March and details are here.
An article in the Health Service Journal (HSJ), about NHS Digital, reported that the Control of Patient Information notices (COPI) have been extended to 30 September 2021. The notices enable patient data to be shared between organisations to support the response to COVID-19.
Confirmation of the extension has subsequently been published on the Government’s website here.
Health Data Research UK has published the news update The Stroke Association announces new funding for COVID-19 and stroke research.
“This research will build on the work of the British Heart Foundation (BHF) Data Science Centre at Health Data Research UK (HDR UK). The research will examine whether having COVID-19 increases someone’s risk of stroke, using health information from nearly all UK adults.”
The news story was published on 09 February and is available here.
OpenSAFELY is a secure analytics platform for electronic health records in the NHS, created to deliver urgent results during the pandemic. It is a collaboration between the University of Oxford, the London School of Hygiene and Tropical Medicine, TPP and other electronic health record software companies, working on behalf of NHS England and NHSX.
OpenSAFELY has published Trends, regional variation, and clinical characteristics of COVID-19 vaccine recipients: a retrospective cohort study in 23.4 million patients using OpenSAFELY with the accompanying message on Twitter:
“New data to Feb 4 from OpenSAFELY on which patients, demographics & diseases are seeing the highest rates of vaccination within JCVI [Joint Committee on Vaccination and Immunisation] priority groups. Big gap between e.g. black and white groups, but gap is smaller in 70-79 age group than over 80. Schizophrenia…still behind.”
The research was published on 04 February and is available here.
Understanding Patient Data (UPD) has published a case study Finding treatments for Covid-19, which examines how patient data was used in the RECOVERY Trial (Randomised Evaluation of COVid-19 thERapY). The trial was created “to identify effective treatments that improve outcomes for people in hospital with suspected or confirmed Covid-19”.
The case study was published on 29 January and is available here.
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.”
Research using routinely collected patient data to show the impact of the COVID-19 pandemic on radiotherapy services is new research to assess the impact of the pandemic on radiotherapy activity in England.
The study used routinely collected patient data “relating to all radiotherapy delivered for cancer in the English NHS, between Feb 4, 2019, and June 28, 2020, were extracted from the National Radiotherapy Dataset”.
“These data will assist health-care providers in understanding the indirect consequences of the pandemic and the role of radiotherapy services in minimising these consequences.”
The authors note that “to our knowledge, this is the first comprehensive national analysis of changes in radiotherapy provision during the first wave of the COVID-19 pandemic”.
However, highlighting the need for faster access to routinely collected patient data they noted that “data were only available for England”, that there was “a lag in data collection and availability” meaning that “longer-term changes in radiotherapy activity beyond the first wave of the pandemic cannot yet be seen”.
Patients are acknowledged as the source of the data via the use MY data Patient Data Citation.
The research was published on 22 January and is available here.
Health Data Research UK (HDR UK) has published the guest blog The Case for Cohorts – Revealing the ‘Before and After’ Response to COVID-19 by Professor Nic Timpson, University of Bristol and Professor David Porteous, University of Edinburgh.
“Collected data has been willingly shared at a greater scale and with a higher level of detail than ever before. While valuable, this ‘in the moment’ data collection has its limits.
When it comes to tracking health and health behaviour at a population scale, researchers and
clinicians need to turn to a different approach – one that is more akin to a collective sensor or intricate web of event records that is able to chart and dynamically adapt measurement to the current challenges of the day – a cohort…”
The blog was published on 20 January and is available here.
Health Data Research UK (HDR UK) has published Vaccine Research Question Prioritisation Patient, Public and Practitioner Involvement and Engagement – the results of a “prioritisation exercise with patients, members of the public, and health and care practitioners to better understand their views and priorities on research questions around COVID-19 vaccines”.
The results were published on 14 January and are available here.
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.
PIONEER – The Health Data Research Hub for Acute Care – has published results of the study To what extent are social determinants of health, including household overcrowding, air pollution and housing quality deprivation, modulators of presentation, ITU admission and outcomes among patients with SARS-COV-2 infection in an urban catchment area in Birmingham, United Kingdom?
The study was “An in-depth retrospective cohort study of 408 hospitalised COVID19 patients admitted to the Queen Elizabeth Hospital, Birmingham… Quantitative data analyses including two-step cluster analyses were applied.”
It concludes “Patients of BAME ethnicity are more likely to be admitted from regions of high air pollution & household overcrowding deprivation, which may explain higher COVID19 ITU admissions reported among BAME patients.”
The study was published on 18 January and is available here.
The Health Research Authority (HRA) has published the report Public Involvement in a Pandemic: lessons from the UK COVID-19 Public Involvement Matching Service.
“Today’s research is potentially tomorrow’s treatment. During the global COVID-19 pandemic the Health Research Authority (HRA) has had to speed up the assessment of new research so that this work could start quickly without compromising standards - allowing more people to benefit. We have streamlined the approval of COVID-19 research while ensuring studies are safe – promoting research while protecting the public…”
The report was published on 13 January and is available here.
The report was launched in Wales using public contributors to emphasise the importance of public and patient involvement in research.
“Welsh members of the Health and Care Research Wales Involvement Community helped launch a new report which shows how involving patients in the design of studies is crucial to COVID-19 research...”
The Welsh report launch featuring the public/patient contributors is here.
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.
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.
The Ada Lovelace Institute has published the report Learning data lessons: data access and sharing during COVID-19.
The report contains findings “from an expert workshop exploring lessons learned from data-driven initiatives that emerged in response to COVID-19.” The workshop was convened by the Ada Lovelace Institute and the Royal Society in July 2020.
"Countering the pandemic effectively demands that data is collected & shared widely & rapidly across institutions, sectors & borders, while ensuring data integrity & respecting the rights of those involved."
The report examines eight ways that data has been accessed and shared, including two patient data examples: the DECOVID project and the ONS [Office for National Statistics] Infections survey.
The report was published on 05 January and is available here.
The Health Foundation’s Networked Data Lab has published Understanding the needs of those most clinically vulnerable to COVID-19: Unanswered questions about the shielded population.
The analysis uses data published by NHS Digital and examines the different data routes used to identify those people who needed to shield. The national data found around 50% of the people, with GPs and hospitals providing the rest of the data. It is a good example of how national data could/should be used but highlights how much work is needed to make this more complete and robust.
The analysis was published on 09 December and is available here.
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.
In line with its stated vision that “statistics should serve the public good”, the Office for Statistics Regulation (OSR) has published an article Why trust and transparency are vital in a pandemic by Mary Gregory, Deputy Director for Regulation.
During the response to the pandemic, they note that “Governments across the UK have used data to justify decisions which impact on everyone in society, including restrictions on retail, travel and socialising.”
The article highlights three principles, summarising by saying that “data should be published in a clear and accessible form with appropriate explanations of context and sources. It should be accessible to all and published in a timely manner.”
On the same day as the article the OSR published a Statement regarding transparency of data related to COVID-19 outlining its expectations, noting that “through this transparency governments can support trust in themselves and the decisions they make.”
Elizabeth Denham, the Information Commissioner has published the blog Engagement key in protecting people’s privacy across the UK during the pandemic.
Elizabeth reviews the implementation and use of the contract tracing apps and the approaches taken by the four parts of the UK. Elizabeth concludes:
“What’s important throughout is that people’s privacy rights are being considered at the heart of those apps and services. That’s crucial to trust, so people have the confidence to download an app or to hand over their data to help supress the spread of COVID-19.”
The blog was published on 13 October and is available here.
Dame Fiona Caldicott, National Data Guardian for Health and Social Care in England, has published results of a poll, which gauged “public opinion on the use of data during the COVID-19 coronavirus pandemic.”
“More than half of survey respondents (56%) agreed that during the coronavirus pandemic, they have learned more about how health and care data can be used to monitor public health and for research. Among those working in health and social care this was higher at 69%.”
However, the results highlight that 73% of health & care workers accepted the need for sharing health & care data during the pandemic. Yet, these workers are more likely to opt-out of their data being used for research & planning – 46% in July 2020. This is alarmingly high.
The poll results were published on 15 October and are available here.
Sarah Wilkinson, CEO of NHS Digital, gave a keynote speech at the Conservative Party Conference The next generation of NHS innovation - embracing the digital revolution. This was reported in the Health Service Journal. Chris, our Expert Data Adviser, contacted Sarah to ask for help obtaining access, explaining that we would like to share details with our membership. Sarah then arranged for the speech to be published in full on NHS Digital’s website, ensuring open access.
Sarah examines NHS Digital’s response to COVID-19 and how data sharing might continue beyond COVID-19, with two key messages:
The speech was published on 14 October and is available here.
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.
Sarah Wilkinson, the CEO of NHS Digital, has written the blog The importance of data in fighting disease during the pandemic.
“Due to the complexity of diseases and variation in outcomes, each patient’s data is extraordinarily valuable in gaining insights into the treatment of others. Medical research, as well as the work of optimising the planning and delivery of clinical services, depends on analysing rich, detailed data sets to identify variations and patterns in illness and treatment outcomes...
Data that has the power to save lives must be put to greater use, with absolute diligence in the management of its use. Efficient and rigorous information governance, combined with transparency, earns us the trust of our citizens so that we can serve them better.”
The blog was published on 25 September and is available here.
The National Institute for Cardiovascular Outcomes Research (NICOR) has published the report Rapid cardiovascular data: We need it now (and in the future).
“The lessons learned during the COVID-19 pandemic have helped inform much improved ways to provide very important and contemporaneous information to government, the NHS and hospitals across the country. These improved ways to gather and analyse data quickly should not be lost in the future, once the first wave of infection has passed. Continuous data entry, integrated analysis and timely reporting are essential to organise and provide optimal care for patients.”
Patients are acknowledged as the source of the data, via the Patient Data Citation, developed by use MY data members.
The report was published on 10 September and is available here.
Health Data Research UK has published the article Decoding doctors' writing to discover how ACE inhibitor drugs affect COVID-19 risk. The article describes the work of Professor Richard Dobson in analysing the unstructured text within medical records.
“Early in the coronavirus pandemic, there were concerns that ACE inhibitors, a commonly prescribed medication, may increase the risk from COVID-19. Professor Richard Dobson and his team from the Precision Health Informatics Data Lab securely accessed and analysed electronic health records of patients admitted to hospital with COVID-19 to show that this wasn’t the case, providing reassurance for doctors and patients.”
The article was published on 11 September and is available here.
Public Health England (PHE) has published a blog to accompany the update of the COVID-19 dashboard - The COVID-19 dashboard: bringing together data and statistics in one place.
PHE has sent thanks to use MY data members who responded to its request for engagement about the dashboard. Our responses contributed to PHE’s research and, along with responses (of which there were 23,000) to three surveys that PHE ran, have helped to improve the dashboard. The dashboard will be updated again, to improve the map functionality, and the accessibility of the data.
“There is a careful balancing act between publishing as much information as possible because we want to be transparent and the need to protect privacy. Safeguarding deeply personal information is at the heart of any decision we make about how much detail to release…we are under no illusion about how urgent the need for data about this pandemic is for many people. Every day at 4pm, when we update the data, there are around 10,000 people online refreshing the page to see the latest totals.”
The blog was published on 4 September and is available here. It includes a link to the dashboard.
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.
There have been recent changes to the way in which figures for deaths related to Covid-19 are reported. The King’s fund has published the article Deaths from Covid-19 (coronavirus): how are they counted and what do they show? which outlines these changes and describes the process used.
The article was originally published on 13 May and has been updated “to reflect recent data and changes in the method used for reporting daily Covid-19 deaths on GOV.UK”
The article was published on 19 August and is available here.
The Ada Lovelace Institute has published the report Confidence in a crisis? Building public trust in a contact tracing app.
“The report presents the findings of a rapid online deliberation project run with 28 members of the public in May and June 2020 by the Ada Lovelace Institute, Traverse, Involve and Bang the Table, to explore attitudes to the use of COVID-19 related technologies for transitioning out of lockdown.
Addressing the question ‘Under what circumstances do citizens think that technological solutions like the COVID-19 contact tracing app are appropriate?’, the ‘mini public’ developed a thoughtful set of criteria by which COVID-19 tech could and should be trusted.”
The report was published on 17 August and is available here.
The article Adapting to the new medical research world discusses the “significant role in medical research” of Scotland and the impact of COVID-19. The article is by journalist Jenni Davison of Holyrood magazine and is sponsored by NHS Research Scotland.
In the article Scotland’s Chief Scientist, Professor David Crossman, highlights three areas that are crucial for successful medical research: the correct infrastructure, the expertise of researchers and scientists and “of course, the patients, who seem to have significant alacrity for participating in research. And I think that not only are they to be thanked, those that have taken part, but they are to be acknowledged for their support of research and seeing the importance of it.”
Acknowledging the role of patients in research is a principle that use MY data strongly supports and which led to the creation of the Patient Data Citation.
The article was published on 17 August and is available here.
Tracking Healthcare Activity and Outcomes for Shielded Patients, England - Management Information is a report from NHS Digital, tracking activity trends and outcomes for shielded patients during the pandemic. The report highlights the value of using patient data to monitor health outcomes.
The report was published on 21 July and is available here.
NHS Digital has published Summary Care Records (SCR) - information for patients - an overview of the SCR, which includes changes made due to COVID-19.
The summary was published on 22 June and is available here.
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.
There is no single truth about Covid-19
Understanding Patient Data (UPD) has published a guest blog by Miles Sibley, Director at the Patient Experience Library - There is no single truth about Covid-19.
The blog was published on 4 August and is available here.
Health Data Research UK (HDR UK) has published Lessons from COVID-19 on UK Health Data Science. These are the outputs from a jointly convened HDR UK and NHS England meeting “where the learnings from COVID-19 were explored in areas including, but not limited to, the need for established infrastructure, improved quality of data, action to tackle inequalities and transparency.”
The summary contains an infographic which highlights the public benefits of using patient data. Key messages include transparency:
“Public engagement can be done fast and done well and people seem willing to have data used when they know why and where their data is going. However, saying you’re going to be transparent isn’t the same as being transparent, for example, more open data and code needs to be shared to be used for rapid analysis of UK health data, and published records are needed of who is accessing the data.”
The outputs were published on 27 July and are available here.
Understanding Patient Data has published the article Putting the trust in Trusted Research Environments (TREs) by Tom Harrison, Senior Policy Office, Understanding Patient Data.
Tom explores three main factors, with the hope they “will provide some instruction to institutions wanting to set up or improve TREs with trustworthiness in mind”:
The article was published on 28 July and is available here.
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.”
The Ada Lovelace Institute has published the report No green lights, no red lines. Public perspectives on COVID-19 technologies.
“In this report, we articulate lessons from public engagement to assist Government and policymakers navigating difficult dilemmas when deploying data-driven technologies to manage the pandemic, and when judging what risks are acceptable to incur for the sake of greater public health.”
The report was published on 10 July and is available here.