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.
The Information Commissioner’s Office (ICO) has published updates on the ICO’s regulatory approach during COVID-19 and beyond.
The updates were published on 14 July and are available here.
The British Medical Journal (BMJ) has published the article Reducing barriers to data access for research in the public interest — lessons from covid-19.
“…public trust and understanding is essential if researchers are to continue to use administrative data, and we should harness the surge in realisation of the value of data for decision-making resulting from covid-19.  Public engagement and involvement should be included “by design and default” within systems for data access, via individual research projects and high-profile national engagement campaigns…”
The piece was first published as an open letter that was sent to the UK Information Commissioner, Chief Medical Officers of the UK, and UK data providers. It was signed by 374 signatories.
The article was published on 6 July and is available here.
The British Medical Journal (BMJ) has published the article Patient and public involvement in covid-19 policy making by Tessa Richards, Senior Editor, Patient Partnership and Henry Scowcroft, Patient Editor, on behalf of The BMJ’s International Patient and Public Advisory Panel.
“…why were the voices of patients and the public tuned out? Despite decades of activism, public and patient involvement is still largely seen as “nice to have” but non-essential—a second step to be carried out after an initial round of consultation with academic, clinical, public health, and policy experts. The resources, skills, views, priorities, and preferences of patients, carers, and the communities which support them are not well recognised, valued, or systematically used to improve care…”
Th article was published on 1 July and is available here.
The National Institute for Health and Research (NIHR) has published the blog Ensuring ethnic diversity in COVID-19 research by Professor Kamlesh Khunti, Director and Professor Azhar Farooqi, Clinical Director, who are both at the Centre for BME Health, University of Leicester.
The blog includes a section on including patients and the public:
“…We also wanted to find out directly from people from BAME groups about what the barriers in engagement in research were, and how they can be addressed. So we engaged with patients and members of the public from local BAME groups to produce a third video, where they share thoughts and suggestions about taking part in COVID-19 research.
The people we spoke to gave their perspectives on how to meaningfully involve BAME groups in research, such as keeping participants informed during and after the research study. The key message that came through from everyone we talked to was that people from BAME groups need to be engaged in a research project from the very beginning, in the spirit of true collaboration and partnership...”
The blog was published on 1 July and is available here.
The Health Research Authority (HRA) has issued the article Praise for new public involvement COVID-19 matching service.
“…Users of the new service like the quick turnaround and the quality of public involvement they received. Meanwhile feedback shows those contributing feel they are doing something valuable and making a real difference...
The new service is aimed at research teams setting up COVID-19 research, who don’t already have connections with public involvement groups, networks, or individuals. Through this new service, we match these researchers with a network or group with relevant public involvement experience, who can arrange input rapidly and at short notice…”
The article was published on 25 June and is available here.
The International Journal of Population Data Science (IJPDS) has published the open letter, from a range of signatories - Why the public need a say in how patient data are used for Covid-19 Responses.
“…The key premise of the consensus statement is that the public should not be characterised as a problem to be overcome, but a key part of the solution towards establishing socially beneficial data-intensive health research for all. This resonates in the current context where it is important to avoid caricaturing “the public” or speculating on how “the public” will respond to particular measures or data practices, but rather to engage diverse publics in consequential deliberation to inform and shape policy responses and data practices…”
The letter was published on 23 June and is available here, along with the list of signatories.
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.