Written evidence from The Health Statistics User Group (DTA 33) Public Administration and Constitutional Affairs Committee Data Transparency and Accountability: Covid 19 Introduction The Health Statistics User Group (HSUG) was established to represent all users of health and health services statistics and to bring together users and producers of statistics. Our activities are aimed at maintaining and improving data quality, data access, and the use of health, health services and social care statistics. The group is independent, but, along with other groups representing users of statistics, we are affiliated to the Statistics User Forum. Our membership includes professionals working in a wide range of organisations including NHS organisations, central and local government, universities and non-governmental organisations. This response has been prepared in collaboration with the Faculty of Public Health At the start of the Covid-19 pandemic, providers of official data and statistics faced multiple challenges. There was unprecedented demand for rapid and detailed information to monitor the pandemic and inform policy decisions. At the same time, statistics providers also had to continue their usual role of monitoring the economy and society in the face of new barriers to collecting the data needed, and in many cases rapidly provide the infrastructure needed to enable staff to work from home. Our response will focus on data relating to health and to health and social care. Devolution is a key feature of data about health and social care in the UK as England, Wales and Scotland have had separate health administrations since 1919, followed by Northern Ireland when it was established in the 1920s. Data collection in each nation is split between government, the NHS, civil registration and a public health agency, making collaboration and communication crucial. During the pandemic, existing joint working between nations was further developed to bring together data and analyses to monitor the pandemic. Response to questions Question 1. Did Government have good enough data to make decisions in response to Coronavirus, and how quickly were Government able to gather new data? 1.1 Like most countries, UK governments had to adapt existing systems and introduce new systems to make decisions in response to coronavirus. Where data and systems existed new data collections and analyses mostly developed quickly. ONS developed new analyses of mortality data, including linkage to the census to investigate ethnic and other differences.1 It adapted its processes to provide new feeds of mortality data, in some cases daily, to government agencies dealing with national and local pandemic planning. It quickly added new questions to existing surveys2 and set up its infection 1. Office for National Statistics. Updating ethnic contrasts in deaths involving coronavirus COVID-19: England and Wales, deaths occurring 2 March to 28 July 2020. https://www.ons.gov.uk/releases/explainingethnicbackgroundcontrastsindeathsinvolvingcovid19englan d2ndmarchto3rdjuly2020 survey, in collaboration with the University of Oxford, University of Manchester, Public Health England and Wellcome Trust in record time.3 Although this survey initially had a small sample, it has now expanded to be the most useful source of data about the prevalence of coronavirus in the population. Once the extent of deaths in care homes was recognised, ONS worked with the Care Quality Commission to improve and publish statistics based on CQC’s regulatory function.4 1.2 ONS and PHE have published regular data on the impact of the COVID cases and deaths by socio-economic group, geography and ethnicity during the course of the pandemic. Whilst these data have given a high-level overview of the emerging inequalities that compound existing inequalities, more depth is needed. For example, more information is needed on the impact of delays in seeking and receiving health care on inequalities in excess mortality. Data on inequalities by ethnic group have become highly politicised and a polarisation of the debate impedes reaching consensus on meaningful action. 1.3 While the focus has been on inequalities in socio-economic status and ethnicity, there is a lack of data on other groups such as LGBTQ+, people with justice sector involvement, people with serious mental health problems, gypsy, Roma and traveller communities, sex workers and people who sleep rough. These factors are not readily available in official statistics and joined-up, creative approaches are needed to develop new research. 1.4 A key data gap has been the impact of COVID-19 on health care inequalities. There is very little publicly available data showing the impact of COVID-19 on inequalities in access to screening, elective care or primary care consultations. In the absence of these data, there is a risk that the NHS could have inadvertently increased inequalities during the response. 1.5 There are areas where existing data collection systems had been allowed to fall into decay, as with communicable disease notification. The systems which developed from the late nineteenth to mid-twentieth centuries were locally based; when the role of medical officer of health was abolished and communicable disease surveillance was moved into the NHS in the 1974 reorganisation, a top-down system evolved. Although public health was moved back into local government under the Health and Social Care Act 2012, it was with a much-reduced role which suffered further as a result of cuts in local authority expenditure. 1.6 Early monitoring of community outbreaks of COVID-19 was undermined by government guidance not following the statutory notification systems impeding the 2. Office for National Statistics. Coronavirus and the social impacts on Great Britain: 30 October 2020. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandwellbeing/bulle tins/coronavirusandthesocialimpactsongreatbritain/latest 3. Office for National Statistics. Coronavirus (COVID-19) Infection Survey, UK: 30 October 2020. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bu lletins/coronaviruscovid19infectionsurveypilot/latest (Accessed October 30 2020) 4. Impact of coronavirus in care homes in England: 26 May to 19 June 2020 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/art icles/impactofcoronavirusincarehomesinenglandvivaldi/26mayto19june2020 notification of suspected cases.5 General practitioners, along with all other registered practitioners have a duty to notify suspected cases of communicable diseases in their patients, but were no longer able to do so when the coronavirus pandemic broke out - and people were told not to consult them if they had symptoms of COVID and to consult NHS 111 instead. 1.7 In other areas the need to create ad hoc data collection systems highlights existing weaknesses in health data, particularly the lack of regular reporting from Trusts in anywhere near real time. Because ad hoc systems had to be created in the NHS, there were a lot of data quality problems especially in earlier months. This not only made monitoring the situation difficult, but contributed to lack of trust in the data, especially as definitions and inclusion criteria changed over time, calling into question the validity of time trends. There have been multiple revisions to the separate methods for counting COVID-19 deaths used by NHS England and Public Health England, as well as revisions to the time-series due to delays in data flows. 1.8 The country which experienced the most problems is England, where the NHS and its data collection function has become fragmented into multiple agencies. This was recognised in 2015 in a systemic review by the Office for Statistics Regulation which pointed out that there was no single individual or organisation with clear leadership responsibility.6 This review led to a number of meetings and initiatives, including a website to help users to locate sources of data about health and heath care.7 1.9 One issue this process did not address was the shortage of statistical capacity in the Department of Health and Social Care. This may have reflected both downsizing through voluntary redundancies and early retirement, as well as analysts moving into the new organisations (such as NHS England and Public Health England) formed as a result of fragmentation over several years. This reduced its capacity to monitor the pandemic. 1.10 It will be important that the creation of the new National Institute for Health Protection does not result in a further loss of analytical expertise or capacity as the new organisation is created and staff move round. This is particularly important given the latest case trends indicating a high level of expertise will be needed for the foreseeable future. It will also be vital not to diminish the capacity in health promotion work as a result of the change. 1.11 Data about tests of COVID-19 have expanded, as the testing regimes and scope of testing have grown.8 It has sometimes been difficult to discern how the data had been 5. Roderick P, Macfarlane A, Pollock AM. Analysis: Getting back on track: control of covid-19 outbreaks in the community. BMJ 2020; 369: m2484 https://www.bmj.com/content/bmj/369/bmj.m2484.full.pdf 6 UK Statistics Authority. Health and Social Care Statistics in England: update on Systemic Review. https://uksa.statisticsauthority.gov.uk/publication/health-and-social-care-statistics-in-england-update-on-