As a result of our 28 May webinar, use MY data was invited by Clare English to take part in her podcast series Ripples. The series looks at the ripple effects of COVID-19 on cancer patients and we took part in the episode The importance of data for cancer patients.
The speakers were Emma Kinloch, Member, use MY data, James Peach, Commercial Director, DATA-CAN and Chris Carrigan, Expert Data Adviser, use MY data.
The podcast is available here.
Following the publication of the Public Health England’s report Beyond the data: Understanding the impact of COVID-19 on BAME groups Digital Health has published the article Collection of BAME Covid-19 data ‘should be mandated’.
“Its report…highlights the need for better research and data around the disparities in health outcomes associated with the virus. Based on feedback from a number of stakeholder engagements with more than 4,000 people, the report concludes better data is needed “to deepen our understanding of the wider socio-economic determinants, improve data recording of faith and ethnicity and greater use of community participatory research”.
Mandatory collection of BAME data should also include death certification, it states. All data should be readily available to local health and care partners to inform actions to “mitigate the impact of Covid-19 on BAME communities””.
The PHE report was published on 16 June and is available here.
The Digital Health article was published on 17 June and is available here.
The House of Commons Library report, published to accompany the 18 June debate about the impact of COVID-19 on BAME groups, is available here.
NHS Digital has published a news article about its role in the RECOVERY clinical trial – NHS Digital enables researchers to find effective treatment for COVID-19.
The article highlights that NHS Digital has “used data from NHS Digital’s Secondary Uses Service (SUS+) and other data sets, to help assess the effectiveness of a number of potential treatments for COVID-19.”
The article was published on 17 June and is available here.
Digital Health has published the article The importance of data in the fight against coronavirus in which Dr Jem Rashbass, director of master registries and data at NHS Digital, explores the key role of data in tackling this coronavirus.
“…If we’d had had a primary care prescription service that included information on both the prescription AND the condition that it was treating, we would have been at a great advantage, as this would have given us instant access to a population-level dataset with actual diagnoses…In the absence of such a dataset, we spent the weekend trying to establish how best we could pull this information together…This was a piece of investigative work that ordinarily would have taken several months. We did the initial work in the space of a weekend…It was that weekend that brought home to me that we were moving into a very different world…”
The article was published on 18 June and is available here.
The Government has announced the next phase of the programme to develop the contact tracing app.
“Following rigorous field testing and a trial on the Isle of Wight, we have identified challenges with both our app and the Google/Apple framework...
While it does not yet present a viable solution, at this stage an app based on the Google/Apple API appears most likely to address some of the specific limitations identified through our field testing. However, there is still more work to do on the Google/Apple solution which does not currently estimate distance in the way required.
Based on this, the focus of work will shift from the current app design and to work instead with Google and Apple to understand how using their solution can meet the specific needs of the public.”
This was announced on 18 June and the Government information is here.
An article from Matt Burgess at Wired magazine - How coronavirus reshaped the NHS. The article explores the positive impact of the coronavirus on technology within the NHS, highlights the lack of transparency around these rapid changes and looks ahead to what might happen next.
The article was published on 23 June and is available here.
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.
The Open Data Institute (ODI) has published the blog Data and Covid-19: why standards matter.
“Our Head of Research and Development Olivier Thereaux describes the importance of interoperability and standards in data, in the context of crises and their recovery, and outlines lightweight steps that data stewards can take.
There are many ways to ensure that data leads to better decisions: making it as open as possible, ensuring that data is accurate, that its quality is high, that it is as free-as-possible of problematic bias. All those things contribute to data that is findable and usable by people who need it, and contribute to positive outcomes while avoiding harmful impacts.”
The blog was published on 15 June and is available here.
The Health Foundation has published the round-up COVID-19's impact on health inequalities. Included within the round-up:
The round-up is available here.
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.
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.
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.
An opinion piece from Dr Jessica Drinkwater, General Practitioner - Back to the future? Patient participation in general practice during covid-19 – in which Jessica examines the halting of Patient Participation Groups (PPGs) due to COVID-19.
“...unlike patient and public involvement in research, which has rapidly moved online, my experience is that PPGs remain quiet. Meanwhile, as patient involvement has ceased, general practice has completely changed, mainly to protect ourselves and our staff…
We have stopped asking the public what they need and want, stopped being transparent in case they get scared, stopped involving them because the doctor knows best…
There needs to be space to involve patients in how we could have done things better, while avoiding blame and recrimination. Doctors need to be part of this conversation, but join it as equals and be open and transparent.”
The article was published on 4 June and is available here.
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.
The Social Care Institute for Excellence (SCIE) has published a blog by Professor Maureen Baker, Chair, The Professional Record Standards Body (PRSB) – Using standards to make care safer and more personalised.
“Information sharing is essential in a pandemic, whether it’s for caring for the sick and vulnerable or tracking and suppressing the spread of the virus. I’ve been a huge supporter of digital transformation throughout my career, but the speed of progress in developing and spreading digital solutions to address COVID-19 has been nothing short of breath-taking...
The coronavirus crisis has also highlighted other gaps in our health and care system. For example, poor information sharing between care homes and hospitals. The PRSB is currently working on a series of standards which will improve information sharing between social care and health care to better connect the two.”
The blog was published on 29 May and is available here.
The Association of Medical Research Charities (AMRC) has published the blog Contact tracing app: implications for medical research and patients, outlining the AMRC’s position on the contact tracing app and its implications for medical research and patients.
“Trust in the use of data for health and research is at stake here. If launched and managed well, in a way that the public feel their data and privacy is protected, the app could boost confidence in the use of data for health and may encourage more people to share their data for medical research.
Medical research can only flourish if people trust and understand the benefits of using health data. It is therefore vital that the app maintains and builds public confidence in health data use.”
The blog was published on 27 May and is available here.
An article by Matt Burgess at Wired explores contact tracing systems for COVID-19 in relation to privacy concerns and public trust.
The NHS Test and Trace service will retain the identifiable patient data for 20 years, of patients who have tested positive for COVID-19, but the privacy notice does not explain in enough detail what will happen to this data.
Natalie Banner of Understanding Patient Data comments within the article:
“The system is voluntary, so people will only use it if the amount of data being collected feels acceptable…That means collecting the minimum amount of data to fulfil the purpose of managing the pandemic. If it feels too invasive, people won’t comply.
The only way to increase public trust, is to build a system worthy of that trust…All legal requirements must be fulfilled, and documentation like Data Protection Impact Assessments published.”
The article was published on 30 May and is available here.
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.
HDR UK has published its weekly round-up of COVID-19 news.
Included within the round-up:
The round-up is available here.
Health Data Research UK (HDR UK) has published its weekly round-up of COVID-19 news.
Included within the round-up:
The round-up is available here.
Following up on his 4 May article, Dr Ian Levy, Technical Director, National Cyber Security Centre (NCSC) has written NHS Covid-19 app security: 2 weeks on, to explain how “security researchers are helping make the NHS COVID-19 App better”.
Ian addresses assumption, ambiguity and errors, the registration process, Bluetooth, encryption and disclosure. The article concludes with the next steps:
“In future versions, the team are going to try to publish a summary of the backlog of issues, so people can see what we know about, but haven't had time to fix yet. The app is a work in progress, and future versions will have all these issues fixed. We can't say right now which versions they will be fixed in (as there's lots to do and the backlog isn't small). But they will all get fixed, as will other things we become aware of in the future.
This is what good security research should lead to: better products and services for all. We get better by peer review, learning from each other, accepting when things aren't quite right and fixing them.
Thanks again to everyone who's reported things to the project. We all really appreciate it and you're making the NHS app better for the UK public."
The blog was published on 19 May and is available here.
The Open Data Institute (ODI) has published an article to explain the difference between the types of Apps being used to manage COVID-19.
The article was published on 20 May and is available here.
An opinion piece by Don Redding, Independent Consultant (and former Director of Policy at National Voices) published in the British Medical Journal (BMJ) - Service “reset” must be informed by patients’ experience of the covid-19 pandemic.
“Arguably what we need now is a new national research agenda for patient experience, which should highlight three dimensions. Firstly, a thorough understanding of what people have experienced during covid-19. Secondly, a radical review of how patient experience is measured; and thirdly a focus on what enables and supports people to self manage their health and medical conditions.”
The piece was published on 21 May and is available here.
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.
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:
Full details and the link to the study are available here.
The latest Health Data Research UK (HDR UK) weekly round-up of COVID-19 news is available.
Included within the round-up:
The round-up is available here.
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.
An opinion piece Reliable, real-world data on excess mortality are required to assess the impact of covid-19 by the London School of Hygiene and Tropical Medicine and Newcastle University, discusses some of the weaknesses in quality and timeliness of data when trying to understand the impact of COVID-19. The authors also highlight some of the difficulties in interpretation when figures are presented to the public.
“Few countries have tested enough people to obtain a reliable estimate of the proportion of their population that is currently infected, or has recently been infected…
In the UK, the Department of Health and Social Care, NHS England, Public Health England and the Office for National Statistics (ONS) have published five different numbers for deaths from covid-19 in England and Wales. These numbers have a two-fold range. That does not inspire confidence in their accuracy or relevance.”
The piece goes on to say:
“A more reliable way to assess the public health impact of covid-19 would be to compare the number of deaths from any cause—not just deaths where the certificate mentions covid-19—that have occurred on each day since 1 January 2020 with the average number of deaths on the same day during, say, 2015 to 2019.”
The opinion piece was published on 7 May and is available here.
National Voices, in partnership with three other organisations (AYUP, PPL and Social Spider) has launched Our COVID Voices.
“Our Covid Voices want to share with the world how those with long-term conditions, disabilities and other health and care needs are living during the pandemic in the UK. Our Covid Voices aims to be a first draft of history, with people across the country sharing their experiences of the UK under lockdown as they happen.
National Voices will use the insight you will generate to influence national and local decision-makers. The experiences shared on this website will help them get a clearer picture of what is happening now, and help us at National Voices make a better case for what needs to happen once this crisis ends.
Full details of the project and how to participate are here.
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.
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:
The letter goes on to set out “the full detail of these and other commitments.”
Links to both of the letters are available here.
Anouk Ruhaak, a Mozilla Fellow “working with AlgorithmWatch, researching data trusts / data governance models” has written an open letter to the Government about the COVID-19 data platform, calling for the Government “to provide the public with more information and take appropriate measures to reduce risk of data sharing and keep the aggregated data under democratic control.”
“…We need to understand what information will be made available and who the public can hold accountable…While we understand that resources are limited, these questions are fundamental to maintaining public trust in the NHS and to help keep high-risk personal data about UK citizens safe at a time when we need that the most. Lack of transparency and opacity in which these agreements are made do not help building this trust.”
The letter has been signed by “several civil society organisations, privacy advocates and academic researchers" who are listed at the end of the letter.
The letter was published on 18 May and is available here.
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.
Elizabeth Denham, Information Commissioner’s Office (ICO) has written the blog Information Commissioner sets out new priorities for UK data protection during COVID-19 and beyond.
“I want to set out how we have reshaped our priorities for the coming months. My teams have been closely monitoring the current trends, recent complaints or requests for support. We have looked ahead to assess where and how we should narrow our focus on the areas we can have the greatest impact to protect the public interest and support economic growth and innovation:
Protecting the public interest: we are focused on the information rights issues that are likely to cause the most harm or distress to citizens and businesses.
Enabling responsible data sharing: ensuring that data can be shared responsibly and with confidence for the public good, including responding to the risk arising from a failure to share.
Monitoring intrusive and disruptive technology: we are ensuring we protect privacy, while enabling innovation and supporting the economy.”
The blog was published on 5 May and is available here.
The ICO has also “…created a new coronavirus hub, specifically for the health and social care sectors. We've answered your most-asked questions, and will be adding to these as and when new advice is issued."
The hub is here.
Included within the round-up are updates on:
The update was published on 7 May and is available here.
The update includes the following areas:
The update was published on 30 April and edited on 8 May; it is available here.
Terence Eden, Head of Open Technology at NHSX has written the blog The technology behind the NHS COVID-19 App.
“We have Open Sourced the code behind the new NHS COVID-19 app. In this technical blog post, Terence Eden, Head of Open Technology for NHSX, discusses the open source offer behind the beta version of the app…
We welcome technical feedback from developers and security researchers. Participation in the code development is via GitHub. We have a Code of Conduct for participants in order to create a safe and welcoming environment for all.”
The blog was published on 8 May and is available here.
The ethics of contact tracing apps: International perspectives is a blog by Sam Cannicott, Senior Policy Advisor, at the Centre for Data Ethics and Innovation (CDEI).
Sharing the blog on Twitter, Sam wrote that it follows “a virtual international roundtable on the ethics of contact tracing apps…in which representatives from nearly 10 countries talked about public trust and how it can be built.”
The blog was published on 12 May and is available here.
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.
Health Data Research UK (HDR UK) has published its weekly round-up of COVID-19 news.
This week’s update includes:
The round-up is available here.
An article by Ian Levy, Technical Director, National Cyber Security Centre - The security behind the NHS contact tracing app.
The National Cyber Security Centre has published this very detailed article which “explains how the new NHS COVID-19 app will help us fight the coronavirus while protecting your privacy and security (and not draining your phone battery).”
The article was published on 4 May and is available here.
NHSX has published details of the Ethics Advisory Board for the development of the App.
“The use of technology will also give rise to questions relating to ethics, privacy and security, and it is important that these are properly explored and addressed. That is why we have established an independent Ethics Advisory Board.
The Chair and existing members, who are not remunerated, are working on recruiting new members to ensure appropriate diversity and expertise.”
Details of the membership of the Ethics Advisory Board are available here. The two lay members are also members of use MY data.
The Terms of Reference for the Board are available here.
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.”
“Medical chest images key to new AI initiative in fight against COVID-19…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.
The Ada Lovelace Institute has published the update Provisos for a Contact Tracing App, which “…articulates the technical and practical limitations that would have to be overcome, and the policy and scrutiny measures that would have to be in place, before a contact tracing app is rolled out in the UK.”
The update builds on the recently published rapid evidence review Exit through the App Store?
The overview information highlights “To date, the additional information does not answer the concerns we raised in our initial report, nor change our recommendation that there is not yet the evidence and justification for an imminent national roll out.”
The update was published on 4 May. The overview and link to the update are available here.
DATA-CAN and University College London (UCL) Institute of Health Informatics have jointly produced the research paper - Estimating excess mortality in people with cancer and multimorbidity in the COVID-19 emergency.
“The COVID-19 emergency in England could result in at least 20% more deaths over the next 12 months in people who have been newly diagnosed with cancer, according to a UCL study with DATA-CAN: The Health Data Research Hub for Cancer in the UK.
The new analysis, published today as a preprint, is the first to focus on the impact of the emergency on mortality rates in people with cancer and uses data from the health records of over 3.5 million patients in England.”
The research was published on 29 April. Overview information and the link to the research are available here
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.
Grace Melvin, Policy Officer with the AMRC has published a blog- Data can save lives in this pandemic, but it must be used responsibly.
Grace explores “the vast potential of healthcare data during this pandemic as well as highlighting the importance of maintaining transparency, trust and communication.”
The blog was published on 23 April and is available here.
NHSX has published a blog Digital contact tracing: protecting the NHS and saving lives.
The blog by Matthew Gould, CEO and Dr Geraint Lewis, Chief Data Officer, focuses on the contract tracing app that is being developed by NHS and associated privacy and transparency concerns.
“The data will only ever be used for NHS care, management, evaluation and research. You will always be able to delete the app and all associated data whenever you want. We will always comply with the law around the use of your data, including the Data Protection Act and will explain how we intend to use it. We will be totally open and transparent about your choices in the app and what they mean. If we make any changes to how the app works over time, we will explain in plain English why those changes were made and what they mean for you.”
The blog was published on 24 April and is available to read here.
Natalie Banner, Lead for Understanding Patient data (UPD) has written the blog Easier said than done: the challenge of transparency during Covid-19.
“It is easy to demand transparency, to expect our decision-makers to open their processes and data to public scrutiny. I firmly believe this is necessary to create a trustworthy system. But the experience of the past few weeks has taught me just how difficult it can be to do in practice, and transparency alone won’t work without trusted relationships. In this post I’ll set out some of the dilemmas we have navigated so far and hope to provide some useful insights to others.”
The blog is available to read here.
NHSX has published a COVID-19 Digital Transformation bulletin which contains a range of updates and guidance.
“NHSX is rapidly delivering products and services with its partners NHS Digital, NHS Business Services Authority, the Department for Health and Social Care and NHS England and NHS Improvement in the fight to stem the spread of coronavirus.
Managing the Covid-19 emergency effectively not only requires large scale, system wide collaboration but the best possible technology and data gathering capability. Swift implementation of new technology and systems is allowing NHSX and others to access secure, timely data; which enables strategic planning decisions about Covid-19 services to be made.
With NHSX now focused on supporting the response to Covid-19, our monthly digital transformation bulletin has been repurposed to keep you up-to-date with all the latest information, guidance and updates relating to coronavirus from a digital and technology perspective.”
The bulletin was published on 17 April and is available here.