UK Statistics AuthorityParliamentary Committee SubmissionsHealth and Sport Committee (Scottish Parliament)
Dear Lewis,
SOCIAL CARE INQUIRY- FOLLOW-UP QUESTIONS
Following our written evidence submitted to your Committee in February, I wish to offer further consideration and view on follow-up questions suggested to us for answer.
1. Measuring individuals' outcomes, and outcomes associated with the integration of health and social care in Scotland. How can outcomes evaluation and measurement be implemented so that it is statistically sound and useful?
All public bodies who are involved in the production of official statistics should adhere to the principles set out Code of Practice for Statistics (the Code). Compliance with the Code ensures that statistics are of public value, are of high quality and are produced by departments and public bodies that can be trusted.
We note that the 31 Integration Authorities are not official statistics producers, and therefore there is no statutory requirement for them to comply with the Code. Scottish Government and Public Health Scotland (PHS) are official statistics producers. This means that, whilst the data sources for social care statistics are provided by bodies and organisations such as health and social care partnerships, local authorities and third sector organisations, statistics based on this data should comply with the Code.
In our February 2020 report, Adult Social Care Statistics in Scotland, we highlighted that, at the time of writing, fundamental gaps existed in social care statistics in Scotland which meant that they were not currently providing the range and depth of information needed to fully serve the public good. We cited as an example that a lack of information about outcomes for people who use social care was one of the most common frustrations we heard whilst conducting our report research. Users of social care statistics told us that too much emphasis is placed on counting system outputs, such as the number of hours of care delivered, costs of services and numbers of staff, and would instead like to know more about the outcomes achieved for the people using those services.
For outcome evaluation and measurement data to be published as official statistics, this will require that they are developed by an official statistic producing body in line with the Code. In our view, this will likely require some form of standardised data collection across the 31 Integration Authorities. Recent examples of such standardised data collection include those developed for the Carers Census and the new PHS adult social care data collection system.
In our report we made the following recommendation: 'All social care statistics producers need to work together, in consultation with health and social care partnerships and statistics users, to identify and prioritise actions to address social care data gaps – including by making better use of existing data – and meet users' information needs.'
In addition to the development of social care statistics, we recognise there may be a need for organisations delivering social care services to develop operational management information on service outcomes to inform commissioning and delivery of social care services. As these organisations are not official statistics producers, this type of information is out of scope of our formal regulatory remit. Notwithstanding this, in 2018 we introduced the ability for organisations who are not official statistics producers to sign up to voluntary application of the Code. This option is available to any producer of data, statistics and analysis which are not official statistics, whether inside government or beyond, to help them produce analytical outputs that are high quality, useful for supporting decisions, and well respected. A commitment to the Code pillars of Trustworthiness, Quality and Value offers the opportunity for an organisation to:
Compare its processes, methods and outputs against the recognised standards that the Code requires of official statistics.
Demonstrate to the public its commitment to trustworthiness, quality and public value.
Outcomes evaluation and measurement is not a challenge unique to Scotland. In our January 2020 report, Adult Social Care Statistics in England, we outlined that reliable and comprehensive evidence is vital for evaluating delivery and informing policy decisions which can lead to improved outcomes and support individual choice.
There are two aspects to this challenge.
Definitions: In the health context, there is a well-developed approach to comparing different interventions based on their impact on the life of the patient – known as the Quality Adjusted Life Years (QALYs). There is not yet a comprehensive framework for thinking about and defining outcomes for social care interventions.
Cost effectiveness: In our England report, we highlighted that unlike health, where the effectiveness of interventions is a priority research area, in social care there is very little understanding of the most cost-effective intervention and what the impact of each intervention is. We strongly encouraged the implementation of joined up data across health and social care in England to understand how the two systems interact and what drives the best outcomes.
2. Professor David Bell, University of Stirling, highlighted in his evidence to the Committee the lack of data collection in Scotland in comparison with other parts of the UK. Currently, Scottish researchers rely on English statistics used for projecting demand. Do you have a view on this, particularly in relation to the policy divergence between the two health and care systems?
With regards to the specific issue that Scottish researchers currently rely on English statistics used for projecting demand, we do not have sufficient evidence to make a judgement on this.
However, in our February 2020 report, Adult Social Care Statistics in Scotland, we noted that many researchers are keen to make more use of health and social care data. We welcomed the creation of Research Data Scotland, which we hope will help address the data access issues that researchers currently face when seeking health, social care and other data, and support greater joining up of these data. In addition, in our report we recommended that PHS and Scottish Government should convene a social care data user summit in 2020 to help inform Research Data Scotland's development and PHS's plans for making more use of linked health and social care data.
Unfortunately, due to the restrictions imposed due to the pandemic, this summit has not yet been convened. We are in regular discussion with both PHS and the Scottish Government and are keen for this recommendation to be realised.
3. What approach(es) to data collection do you think need to be considered and what data do you feel is required?
As part of our research for our February 2020 report, Adult Social Care Statistics in Scotland, we spoke to organisations who are data providers for the current social care statistics. We highlighted the following important issues that require careful consideration as part of any new or amended official statistics data collection system.
Resourcing issues beset all aspects of social care data collection and statistics production. This includes the availability of staff to collect data and return it, the need for investment to improve its quality, the need for entirely new forms of data to be collected to better meet user needs, and the availability and capability of staff to use the data themselves to inform service development locally. We recognise that the resource implications associated with building new data systems are far greater than those associated with improving existing statistics. The drivers and funding to do this will also be largely beyond the reach of statistics producers alone.
Building data collection systems that deliver value to staff and users of social care is also difficult to do without imposing unreasonable administrative burdens. A significant amount of social care activity takes place beyond the scope of public sector service settings and the majority of the social care workforce (around 70%) is employed by private and third-sector providers. This makes the task of building routine data collection systems significantly harder.
It is our view that Scotland is not alone in facing these challenges. Our work in this sector as a UK wide regulator has identified similar difficulties with collecting data in disparate settings about human experiences (as opposed to flows of money or service provision).
Whilst we cannot be specific around what data is required in this case, we do expect that, in line with the Code, users of statistics and data should be at the centre of statistical production. Understanding user needs and seeking the views of users is important and should be used to direct what data is required. Official statistic producers should establish an ongoing dialogue with users to ensure that statistics continue to meet changing user needs and demand.
The COVID-19 pandemic has emphasised the importance of responding to user need and has brought attention to existing gaps in adult social care statistics.
I hope this is useful to the Committee.
Ed Humpherson
Director General for Regulation
Dear Lewis
THE FUTURE DELIVERY OF SOCIAL CARE IN SCOTLAND: OSR INQUIRY SUBMISSION
We have today published our review of Adult Social Care Statistics in Scotland. We are using this work as the basis of our submission to the Health and Sport Committee's Social Care Inquiry (see
annex).
Statistics that support our understanding of people who need or provide care, the impact it has on their lives, how the adult social care sector is currently delivered and how this might need to change in the future are an essential element in an ideal model of care. Without adequate statistics it is also impossible to assess the extent to which social care provision is equitable.
Our submission outlines various issues affecting the quality and value of adult social care statistics in Scotland that need to be addressed. Statistics producers have clearly demonstrated their strong understanding of these issues and share many of the concerns that users raised with us. Work is already underway to bring about positive improvements to adult social care data and statistics in Scotland. However, we believe that a major transformation of adult social care data and statistics is needed to fully meet users' needs and this will require more fundamental action. We have made recommendations in three strategic areas to support this:
• clearer responsibility for analytical leadership is required to scope and deliver local and national level improvements
• the imbalance in resources currently available for health service and social care statistics needs to be addressed
• data systems need investment to improve the quality of existing datasets and to identify ways to capture new data to fill the many gaps that users have identified.
We will continue to work with a range of organisations to make the case for improvements to social care statistics in Scotland and more widely across the UK. We hope to raise the profile of these
issues through this inquiry submission, the more detailed report about Scotland published today, and via our companion reports about adult social care statistics in England and Wales.
I look forward to seeing the conclusions of your inquiry.
Your sincerely
SCOTTISH PARLIAMENT: SOCIAL CARE INQUIRY
SUBMISSION FROM THE OFFICE FOR STATISTICS REGULATION
1. The Office for Statistics Regulation (OSR) is the independent regulatory arm of the UK Statistics Authority. We provide independent regulation of all official statistics produced in the UK, including those in Devolved Nations and the NHS. Our regulatory work is underpinned by the Statistics and Registration Service Act 2007.
2. We set the standards official statistics must meet through the statutory Code of Practice for Statistics. We ensure that producers of official statistics uphold these standards by conducting
assessments against the Code. Those which meet the standards are given National Statistics status, indicating that they meet the highest standards of trustworthiness, quality and value. We
also report publicly on system-wide issues and on the way statistics are being used, celebrating when the standards are upheld and challenging publicly when they are not.
3. We have staff in three locations: Newport, Wales; London; and Edinburgh.
This submission
4. This submission, which is based on the findings from our Review of Adult Social Care Statistics in Scotland, published on 20 February 2020, addresses the following two questions being
asked by the Inquiry:
• Q3: Looking ahead, what are the essential elements in an ideal model of social care (e.g. workforce, technology, housing etc.)?
• Q4: What needs to happen to ensure the equitable provision of social care across the country?
5. Statistics that support our understanding of people who need or provide care, the impact it has on their lives, how the adult social care sector is currently delivered and how this might need to
change in the future are an essential element in an ideal model of care. Without adequate statistics it is also impossible to assess the extent to which social care provision is equitable.
Are adult social care statistics in Scotland meeting users' needs?
6. Statistics serve the public good when they enable a wide range of users to answer important questions. To do this adequately they need to:
• add value by covering the topics that matter to people
• have insightful commentary that draws out key messages
• tell a coherent story focused on the needs of information seekers, not providers
• be based on data of a suitable quality
• be published in a timely fashion
• be accessible in formats that support further analyses.
7. During our review we spoke to statistics users and producers, and conducted our own analysis of the adult social care statistics landscape. Based on the evidence we gathered, it is clear that
there are issues in all these areas that need to be addressed.
• There are gaps in the provision of statistics on social care – we don't know how many people currently need social care and whether those needs are being met, how many people might
need care in future, and we don't know how well social care services achieve their goals of helping people to live independently and maintain a good quality of life. It is difficult to estimate the total amount of public expenditure committed to adult social care. Out-of-pocket spending by individuals and their families is even harder to identify. Further examples of
questions that users told us they couldn't answer are provided at the end of this submission.
• Many of the existing statistics that are published need more insightful commentary, and there needs to be greater coherence between all the different sets of statistics to make it easier for
users to see the complete picture about this sector. The timeliness of some statistics needs to be improved.
• Data quality is improving over time, but major challenges still remain, and re-use of social care data for research is not as extensive as it could be.
8. These issues affect a wide range of people and organisations who are not having their analytical needs fully met. These include: the general public, care users, care providers, Integrated Joint Boards, councils, NHS bodies, councillors and members of parliament, scrutiny and regulatory bodies, academics and researchers, and Scottish Government policy makers.
9. These gaps matter: statistics are necessary to inform policy, workforce planning and budget allocation. Individual users of care and their families need reliable information to help inform
their decisions. It is impossible to develop and evaluate future models of adult social care delivery without knowing how things stand currently.
Improving adult social care statistics
10. The statistics users we spoke to had a strong vision of what social care statistics should be delivering. And while there is currently a large gap between this vision and what currently
exists, official statistics producers in Scottish Government, ISD, the Scottish Social Services Council and the Care Inspectorate clearly share many of the concerns raised by users and are
demonstrating a strong appetite to make improvements. For example, the following developments are already helping to address some of these issues:
• new national data systems have been developed to improve data collection about the adult social care services delivered and funded by health and social care partnerships
• new statistics based on these data have been produced by ISD and users have been actively involved in shaping their development
• statistics based on the new Carers Census will be published by Scottish Government in 2020 that will deliver insights that are unavailable elsewhere in the UK
• new workforce statistics about vacancy rates have been developed by SSSC and the Care Inspectorate and plans are in place to make more use of data collected via inspections of social care services.
The Office for Statistics Regulation's recommendations for adult social care statistics in Scotland
11. Building on the developments that statistics producers have already implemented, we have four recommendations to support further short to medium-term improvements.
• All social care statistics producers need to work together, in consultation with health and social care partnerships and statistics users, to identify and prioritise actions to address social
care data gaps – including by making better use of existing data – and meet users' information needs.
• All social care statistics producers should work together – with statistics users – to identify ways to make social care statistics in Scotland more coherent. The social care topics that
matter to users should be the guiding framework for statistics presentation.
• Public Health Scotland, Scottish Government and the Care Inspectorate need to work together to identify a long-term solution that enables social care data to be shared safely and
efficiently.
• Public Health Scotland and Scottish Government should convene a social care data user summit in 2020 to help inform Research Data Scotland's development and Public Health
Scotland's plans for making more use of linked health and social care data.
12. The long-term transformation of adult social care statistics in Scotland will need more fundamental action. We have made recommendations in three strategic areas to support this.
• Clearer leadership to drive analytical integration – responsibility for social care statistics production is currently spread between different organisations. This can act as a barrier to the
more joined-up approach to data collection and analysis that is needed to improve the public good of the statistics. Clearer responsibility for analytical leadership is required to scope and
deliver local and national level improvements.
• Rebalance resources – there is an imbalance between the resources available for health service statistics production and social care statistics. This imbalance exists at all levels, from
the national bodies responsible for publishing statistics down to the teams and systems supporting data collection in local areas.
• Invest in data systems – the biggest challenge – logistically, technically and financially – is improving the underlying data used to create social care statistics. This will involve improving
the quality of existing data and identifying ways to capture new data to fill the many gaps that users have identified.
13. We will continue to use our voice to support the many innovations and improvements to data capture, analysis and dissemination that are already happening, and to advocate for further
developments in this area, to ensure that the statistics better reflect the lived experience of people using social care services.
Example questions about adult social care that users told us they cannot answer
Questions about people needing social care
• Is social care meeting its goals of helping people to live independently and maintain a good quality of life?
• What is the extent of unmet social care need in the population?
• How does adult social care use vary by protected characteristics and other sub-groups of interest?
• How many people are waiting for social care assessments and how long are they waiting for?
• What social security benefits are social care users receiving?
Questions about adult social care service delivery
• Where is there good practice locally?
• Are the right services being provided?
• How does service provision vary across Scotland (evidencing the postcode lottery)?
• Why does Self Directed Support (SDS) use vary across Scotland?
• What is the extent of adult social care input in end of life and palliative care?
• What are peoples' experiences of using adult social care?
• What contributions do anticipatory and intermediate care make?
Questions about the cost of social care
• How much is spent on adult social care – by central government, local government, NHS boards?
• What is the extent of individuals self-funding regulated and unregulated care?
• How are Self Directed Support (SDS) budgets spent?
WHAT SHOULD PRIMARY CARE LOOK LIKE FOR THE NEXT GENERATION? OSR INQUIRY RESPONSE
We have today published our response to the Health and Sport Committee's inquiry looking at the future of primary care in Scotland (see annex).
Statistics published by public sector bodies should be produced in a trustworthy way, be of high quality, and provide value by informing answers to society's important questions. Our submission outlines our view that primary care statistics in Scotland do not currently deliver public value because many important questions cannot currently be answered.
The Information Services Division of NHS Scotland (ISD) has worked with general practices across Scotland to develop SPIRE, a unique asset for Scotland's health data landscape. It has overcome significant challenges to deliver a system that has the potential to transform understanding of primary care and support a wide range of information needs in a way that has not been possible before now. However, major information gaps remain that need to be addressed to ensure that decisions about the future of primary care in Scotland are evidenced-based, open to scrutiny, and can answer the questions people have about how primary care contributes to improving health and wellbeing. We have made some recommendations for ISD to help meet these aims.
I look forward to seeing the conclusions of your inquiry. I am copying this letter to Scott Heald, Head of Profession for Statistics, ISD.
SCOTTISH PARLIAMENT HEALTH AND SPORT COMMITTEE INQUIRY WHAT SHOULD PRIMARY CARE LOOK LIKE FOR THE NEXT GENERATION?SUBMISSION FROM THE OFFICE FOR STATISTICS REGULATION
2. We set the standards official statistics must meet through the statutory Code of Practice for Statistics. We ensure that producers of official statistics uphold these standards by conducting assessments against the Code. Those which meet the standards are given National Statistics
status, indicating that they meet the highest standards of trustworthiness, quality and value. We also report publicly on system-wide issues and on the way statistics are being used, celebrating when the standards are upheld and challenging publicly when they are not.
This submission: the public value of primary care statistics in Scotland
4. Statistics published by public sector bodies should be produced in a trustworthy way, be of high quality, and provide value by informing answers to society's important questions. To answer the question "what should primary care look like for the next generation?" it is essential to understand how primary care is delivered, what outcomes it achieves for people, and to be able to monitor changes in both of these over time.
5. This submission outlines our view that primary care statistics in Scotland do not currently deliver public value.
What do we know about primary care in Scotland?
6. The Scottish Parliament Information Centre briefing – Primary Care in Scotland – provides a helpful overview of information about this topic. The Information Services Division of NHS Scotland (ISD) publishes comprehensive statistics about the primary care workforce (e.g. GPs, dentists, optometrists, pharmacists, allied health professionals). Detailed information is also available about GP practice populations and contracts and out of hours provision. Extensive prescribing data is provided via statistical reports, a dashboard and open data. Information about eye-care in primary care settings is published annually. Patients' views about primary care provision are
captured by the Scottish Government's biennial Health and Care Experience Survey of people registered with a GP practice.
What don't we know about primary care in Scotland?
7. While the size and composition of the primary care workforce is well documented, the main statistics based on administrative data only include headcounts. Information about whole time equivalent workforce numbers, which are more useful to users for workforce planning and understanding capacity in the system, has to be collected via surveys of GP practices, which have been conducted biennially in recent years. The most recent statistics are for 2017 and there is no published information about plans for future data collections.
8. We know more about primary care provision when GP practices are shut than when they are open, thanks to the data collected about out of hours provision which includes numbers and types of contacts, contact outcomes, and contact rates by age and gender.
9. Our analysis, and the knowledge we have accumulated about health and social statistics users' needs through our regulatory work, has identified a range of questions that illustrates the kinds of issues that, at present, statistics cannot answer. We are grateful to the statistics users who shared their views with us on this topic. We recognise that not all of these questions will have the same level of interest from users
and, as with all areas of statistics production, some prioritisation is necessary. We also appreciate that there are significant challenges involved in collecting data from a federated system with over 900 independent contractors. These include:
• How many GP consultations and other primary care contacts take place per year?
• How does primary care service use vary by socio-demographic group, health status,
protected characteristics and area?
• How many booked appointments are not attended?
• What is the level of unmet demand for primary care services?
• Why do people consult their GPs and other primary care providers?
• What health assessments are carried out in primary care?
• What is the prevalence of individual and multiple health conditions, including frailty, among people registered with GPs – and do the condition codes with primary care correspond with data held in other NHS data systems?
• How many people registered with GPs live in care homes or are house-bound?
• How many people in Scotland have an up to date Anticipatory Care Plan?
10.Beyond these individual questions we also know there is a huge appetite for joined-up statistics that paint a more complete picture of people's journeys through the different parts of the health and social care system, especially for people with multiple long-term conditions. Scotland is well placed to provide such insights thanks to its longestablished use of an individual patient identifier, the Community Health Index (CHI). ISD's recently published statistics on emergency hospital admissions among people living in care homes provide a glimpse of the potential that exists to understand more about the relationship between primary and secondary care via more joined-up statistics.
Why are there primary care data gaps in Scotland?
11.Some of these gaps are partly due to the closure of the Practice Team Information (PTI) programme that had, until 2012/13, provided national-level statistics about GP consultations. PTI used data drawn from a sample of 6% of practices in Scotland which meant it was not a large enough to be used to produce statistics for local areas.
12.A new data infrastructure – the Scottish Primary Care Information Resource (SPIRE) – has been developed that should, in time, enable data to be collected on a universal basis from all general practices in Scotland (currently over 900). Coverage of practices has now reached 95% and complete coverage is expected once IT issues have been resolved in the remaining ones. This data will help to meet a much wider range of users' needs than the sample from PTI was able to. Initially, SPIRE's development has focused on supporting the information needs of individual general practices and clusters of practices. ISD informs us that in the year ahead SPIRE will be developed further to meet a wider range of purposes, including support for health and social care partnerships and Scotland-wide data. This would enable the production of populationwide information for research and statistical purposes.
13.The scale of transformation required to build a system capable of delivering data safely from over 900 independent contractors, with multiple types of IT systems in place, should not be underestimated. The progress made by ISD and general practices to date is commendable. It is also helpful that SPIRE's roll-out will benefit from ongoing investment in a new general practice IT infrastructure. However, progress on delivering data for practices is currently further ahead than plans for using the data to generate population-level statistics about primary care. There is limited information currently available about when new primary care statistics will be delivered and what they might look like. We encourage ISD to address this.
14.It is worth reiterating that some of the questions highlighted above could be difficult to answer using routine systems without placing additional data collection burdens on primary care staff, potentially reducing the time available for direct clinical care. Some might prove to be impossible to answer. Understanding these kinds of limitations is important. Therefore, greater transparency about what statistics SPIRE (and other primary care data systems) can and cannot deliver would be helpful to users.
What is the picture like outside Scotland?
15.All of the UK's countries lack statistics about what is actually delivered in primary care and about outcomes for patients. For example, much of the Nuffield Trust's analysis of gaps in English primary care data also applies in Scotland.
16.There are also examples of statistics available in some parts of the UK that Scotland either does not currently have, or does not produce in the same joined-up format:
• In England, new data resources bringing together primary care information are being developed by NHS Digital that will, in time, provide a much fuller and more accurate picture of primary care in England. For example, since December 2018 England is the only part of the UK with statistics about GP appointments (such as volume, type of health professional consulted, elapsed time between booking and appointment) which captures some, but clearly not all, primary care activity. These are currently experimental and still undergoing development.
• In Wales, Welsh Government publishes annual statistics about GP access in a report that brings together information about trends in practice numbers; opening hours; appointment availability; and patient satisfaction with, and experiences of, accessing GPs.
• In Northern Ireland there is an annual compendium report on Family Practitioner Services with information about a range of primary care services: GPs, ophthalmology, dental health and pharmacy. UK-wide comparisons are presented, where available. The statistics are also released quarterly on a provisional basis.
Is comparable primary care information available across the UK?
17.As with other health service and population health statistics, there is no single portal to bring together UK-wide information about primary care. Users therefore need to source information from each country separately, rely on sign-posting between individual publications, and then establish whether the statistics are directly comparable.
18.Workforce data are available in all countries based on headcounts and numbers of GPs per registered patients, but there are issues with comparability which make it hard to answer questions accurately. A UK-wide publication about trends in the general practice workforce was discontinued in 2017. As noted above, whole time equivalent workforce statistics are valued by users, but these are only available biennially in Scotland, are published quarterly in England, and are not available in Wales and Northern Ireland.
19.Scotland, Wales and England all produce statistics about patient satisfaction with GP services. However, as these surveys are not conducted using harmonised questions, levels of patient satisfaction cannot be directly compared between counties.
The Office for Statistics Regulation's recommendations for Scottish primary care statistics
20.ISD has worked with general practices across Scotland to develop a unique asset for Scotland's health data landscape. It has overcome significant challenges to deliver a system that has the potential to transform understanding of primary care and support a wide range of information needs in a way that has not been possible before now.
21.However, major information gaps remain that need to be addressed to ensure that decisions about the future of primary care in Scotland are evidenced-based, open to scrutiny, and can answer the questions people have about how primary care contributes to improving health and wellbeing.
22.To achieve these objectives, ISD Scotland needs to:
• publish its plans for official statistics about primary care;
• ensure that primary care statistics are produced in a coherent way that brings together relevant information to tell a clear story;
• work with a wide range of users to ensure that primary care statistics meet their needs.