Improved measures for healthcare quality 2013

Measurements for Improved
Quality in Healthcare
Direct response
2013:02
This country report on Scotland is focused on systematic
healthcare improvements based on measurements within the
healthcare system, including clinical outcomes indicators and
disease registries. It is part of the Swedish Agency for Growth
Policy Analysis’ Health Measurement Project in which quality
measurements in healthcare have been studied in a number of
countries.
Scotland

Reg. no. 2013/012
Swedish Agency for Growth Policy Analysis
Studentplan 3, SE-831 40 Östersund, Sweden
Telephone: +46 (0)10 447 44 00
Fax: +46 (0)10 447 44 01
E-mail: info@growthanalysis.se
www.growthanalysis.se
For further information, please contact Martin Wikström
Telephone: 010 447 44 73
E-mail: martin.wikstrom@tillvaxtanalys.se

MEASUREMENTS FOR IMPROVED QUALITY IN HEALTHCARE
3
Foreword
This country report is focused on systematic healthcare improvements based on measure-
ments within the healthcare system, including clinical outcome indicators and disease reg-
istries in Scotland. It is part of Growth Analysis’ Health Measurement project in which
quality measurements in healthcare have been studied in a number of countries. The Swe-
dish Ministry of Health and Social Affairs commissioned the project.
The report was written by Johanna Lundberg (Sweco) and Pernilla Regårdh (Sweco) in
collaboration with Martin Wikström (Swedish Agency for Growth Policy Analysis).
Stockholm, April 2013
Enrico Deiaco, Director and Head of Division, Innovation and Global Meeting Places

5
Table of Contents
Summary .............................................................................................................................. 7
Sammanfattning .................................................................................................................. 9
1 Introduction to the healthcare system ................................................................... 11
1.1 Overarching structure......................................................................................................11
1.2 Major actors ....................................................................................................................13
The Scottish Government ....................................................................................131.2.1
NHS Scotland ......................................................................................................141.2.2
1.3 Private – public................................................................................................................15
1.4 Insurance system and funding ........................................................................................16
2 Initiatives for healthcare quality and follow-up..................................................... 17
2.1 The Healthcare Quality Strategy for NHS Scotland.........................................................17
2.2 Measuring subjective experiences of healthcare.............................................................18
2.3 Public awareness of quality within the healthcare system...............................................19
3 Information systems and registries........................................................................ 21
3.1 Audits of NHS Boards .....................................................................................................21
HEAT Targets ......................................................................................................213.1.1
3.2 National audits.................................................................................................................22
Hospital Standardised Mortality Ratios (HSMR) ..................................................223.2.1
The Scottish Audit of Surgical Mortality (SASM) ..................................................223.2.2
The Scottish Trauma Audit Group (STAG)...........................................................233.2.3
Scottish Intensive Care Society Audit Group (SICSAG).......................................233.2.4
The Scottish Stroke Care Audit (SSCA)...............................................................233.2.5
Cancer Audits ......................................................................................................233.2.6
Scottish Audit of Intracranial Vascular Malformations (SAIVM)............................243.2.7
The Musculoskeletal Audit ...................................................................................243.2.8
3.3 Quality improvement programs .......................................................................................24
The Scottish Patient Safety Programme (SPSP) .................................................253.3.1
Better Together ....................................................................................................253.3.2
Detect Cancer Early.............................................................................................253.3.3
3.4 Registries ........................................................................................................................26
The Cancer Registry ............................................................................................263.4.1
The Renal Registry ..............................................................................................263.4.2
The MS Register ..................................................................................................273.4.3
The Scottish Diabetes Register and Survey.........................................................273.4.4
3.5 Other quality initiatives ....................................................................................................27
The Quality Measurement Framework.................................................................273.5.1
Primary care and general practitioners ................................................................283.5.2
Surgical and Medical Profiles...............................................................................283.5.3
Scottish Coronary Revascularisation Register .....................................................293.5.4
3.6 Data collection and maintenance ....................................................................................29
3.7 Data dissemination..........................................................................................................30
4 Conditions for data collection................................................................................. 31
4.1 Incentives for participating in data collection ...................................................................31
4.2 Data quality, credibility and public awareness.................................................................32
4.3 New initiatives in data collection and data linkage...........................................................32
4.4 Major relevant infrastructures..........................................................................................33
Quality Improvement National Reporting Tool .....................................................344.4.1
Quality Measures Framework ..............................................................................344.4.2
5 Use of data ................................................................................................................ 36
5.1 Cost-efficiency and competitive measures ......................................................................36
5.2 Access to healthcare.......................................................................................................37
5.3 Patient safety...................................................................................................................37
5.4 Research.........................................................................................................................37
5.5 Data ownership, privacy and integrity..............................................................................38
6 Discussion / Conclusion.......................................................................................... 39

7
Summary
The two main actors in the Scottish healthcare system are the Scottish Government and
NHS Scotland (National Health Service for Scotland). Budget, policies and strategic initi-
atives are set by the government, while the NHS is responsible for the delivery of care to
the population in its region, and held accountable to the Scottish Parliament. Many
healthcare functions are delegated from the government to the 14 territorial NHS Boards,
which are responsible for planning and delivering all health services to the population in
their areas.
The Healthcare Quality Strategy for NHS Scotland, enacted by the Scottish Government in
2010, provides the overarching context for prioritization of policy development and quality
improvement efforts within the NHS. The strategy encourages whole system improvement
through mutually beneficial partnerships between clinical teams, the people in their care,
and other national organizations involved in healthcare delivery. At its core are three qual-
ity ambitions:
• Person-centered – mutually beneficial partnerships between patients, their families and
those delivering health services, which respect individual needs and values and which
demonstrate compassion, continuity, clear communication and shared decision-
making.
• Safe – there will be no avoidable injury or harm to people from health care they
receive, and an appropriate, clean and safe environment will be provided for the
delivery of health care services at all times.
• Effective – the most appropriate treatments, interventions, support and services will be
provided at the right time to everyone who will benefit, and wasteful or harmful
variation will be eradicated.
Within the NHS, the Information Services Division (ISD), Healthcare Improvement Scot-
land (HIS) and the Scottish Intercollegiate Guidelines Network (SIGN) drive the national
quality improvement work. The ISD and HIS in particular have increased their roles in
quality improvement in recent years and also work closely together on measurement, data
collection, and analysis.
As for data and measurement, information for tracking and improving healthcare quality is
collected across the entire Scottish healthcare system and spread out across several actors.
Historically, data collection and registry maintenance has been decentralized and driven by
hospitals and clinical networks. Since a couple of years back, however, the ISD has taken
over responsibility for running most national registries and audits. The national strategy is
to try and link existing records together with added finesse, rather than start new registries.
A general note is to not confuse national quality measurements and quality registries. Dis-
ease-specific quality registries are few in Scotland, while national measurements of quality
are made systematically to improve healthcare.
Four overarching measurement systems are used to track and improve healthcare quality in
Scotland today: audits, to evaluate the performance of the 14 NHS health boards; national
audits for measuring and improving the quality of healthcare for selected diseases or con-
ditions; specific quality improvement programs, typically coordinated by the HIS, that can
drive improvements around a specific topic, and finally the three national disease registries

8
in Scotland. From a public health perspective, these registries are mainly used on a
population level to spot patterns and variations, hence leading to initiatives for changes for
improving care.
Participation in register work is generally accepted within the Scottish healthcare sector.
There is no reimbursement for reporting data to the registers or central institutions and no
financial penalties if data are not reported. In contrast to the hospitals, GPs have a much
more developed financial incentive to develop quality as part of their reimbursement or
pay is based on their own record data which should mirror compliance with certain nation-
ally set guidelines.
Researchers can access most registries hosted by the ISD and other organizations, but
sometimes need permission from different Health Boards and the Privacy Advisory Com-
mittee, which can complicate the research process. However, projects are under way to try
to facilitate access to both primary and secondary care data for researchers.
There is also a general understanding around the importance of having publically available
data. The main data that are regularly published in the media and known to the public are
standardized mortality ratios (SMRs) and data on waiting times. The inclusion of patients
in registers is described as in general accepted by the public, but it is not established
whether this refers to limited awareness among patients or whether it is an active choice.

9
Sammanfattning
Skottlands regering och NHS Scotland (National Health Service for Scotland) ansvarar för
hälso- och sjukvårdssystemet i Skottland. Regeringen utarbetar budget, policies och strate-
gier, medan NHS ansvarar för utförandet och svarar inför skotska parlamentet. Många
funktioner delegeras av regeringen ner till de 14 hälsoråd (NHS Boards, liknande Sveriges
landsting) som i sin tur bär ett ansvar för att leverera vård på alla nivåer till det geografiska
område som rådet ansvarar för.
Skottlands kvalitetsstrategi för hälso- och sjukvården klubbades igenom 2010 och är det
centrala dokumentet för policyutveckling och kvalitetsarbete inom NHS. Strategin upp-
muntrar kvalitetssäkring och kvalitetsförbättring av hela sjukvårdssystemet genom samar-
beten på olika nivåer: mellan personalgrupper inom vården, mellan patienter och vårdper-
sonal, samt mellan andra organisationer som är verksamma inom vårdsektorn. Tre centrala
spår genomsyrar strategin:
• Personfokus – individuella behov ska respekteras och arbetet ska genomsyras av
medkänsla, kontinuitet, tydlig kommunikation och ett transparent system för be-
slutsfattande.
• Säkert – vårdmiljön ska inte innebära några extra risker utöver det som normalt kan
förväntas, för vare sig patienter, anhöriga eller personal.
• Effektivt – de mest lämpliga och effektiva behandlingarna ska erbjudas, liksom den
bästa tänkbara servicen, och onödiga eller skadliga avvikelser ska systematiskt arbetas
bort.
Inom NHS är ansvaret för kvalitetsarbetet uppdelat på Information Services Division
(ISD), Healthcare Improvement Scotland (HIS) och Scottish Intercollegiate Guidelines
Network (SIGN), där särskilt de två förstnämnda har fått en mer centraliserande roll på
senare år och numera arbetar tätt tillsammans kring mätningar, datainsamling, analys och
implementering. Datainsamling i syfte att förbättra kvaliteten inom vården görs på alla
nivåer inom det skotska hälso- och sjukvårdssystemet. Även om register och mätningar
tidigare utfördes av andra aktörer, har ISD inom NHS mer och mer tagit över ansvaret för
upprättande och underhåll av register samt genomförande av revisioner. Den nationella
strategin bygger mer på att länka samma redan befintliga register och databaser än att upp-
rätta helt nya register. Det är viktigt att inte blanda ihop nationellt kvalitetsarbete, som
bygger på datainsamlingar, och diagnos-specifika kvalitetsregister, vilka endast utgör ett
fåtal i Skottland.
Det finns fyra övergripande system för kvalitetsmätningar: revisioner av de 14 hälsoråden
för att säkerställa att deras verksamhet utförs i enlighet med uppdraget; revisioner på nat-
ionell nivå för att säkerställa kvalitet inom olika vårdsektorer och diagnoser; särskilda
kvalitetsprogram, normalt koordinerade av HIS, som till exempel kan gälla förbättringar av
en speciell aspekt av vården, och slutligen de tre diagnos-specifika registren (cancer, MS
och njurregistret). Ur ett folkhälsoperspektiv kan sägas att registren generellt används för
att identifiera mönster på nationell nivå, för att få underlag till att göra eventuella föränd-
ringar i vården gällande kvalitet och tillgänglighet.
Deltagandet i mätningar och utförandet av desamma är generellt högt och högt accepterat
inom det skotska hälso- och sjukvårdssystemet. Det finns inga belönings- eller straffmek-

10
anismer för de aktörer som inte vill delta, men systemet har en peer-review-komponent
inbyggd och att inte delta ger därför anledning till misstankar om att aktören ifråga har
något att dölja. Deltagandet är därmed alltid fullständigt.
Vad gäller tillgänglighet hos insamlade data har forskare tillgång till de flesta register som
sköts av ISD, men i vissa fall krävs ansökan om tillstånd hos ett eller flera av de 14 hälso-
råden samt tillstånd från en etisk nämnd (the Privacy Advisory Committee) vilket kan
komplicera forskningsprocessen. Det finns dock flera nystartade projekt som syftar till att
tillgängliggöra data på ett enklare sätt, med forskare som främsta målgrupp men i viss mån
även för kommersiella aktörer. Det sistnämnda spåret är dock omdebatterat och Skottland
har en mer restriktiv hållning till kommersialisering av patientdata jämfört med England.
Initiativ har också tagits för att underlätta koppling av primärvårds- och sjukhusdata, som
idag är två helt olika system.
Vikten av transparens i systemet framhävs vidare i Skottland och allmänhetens tillgång till
data är god via ISD, som även kan utföra enklare analyser av populationsdata vid förfråg-
ningar från forskare eller allmänhet. Data kring olika utfall publiceras regelbundet, medi-
erna rapporterar dock mest frekvent om SMR (standardized mortality ratios) som är ett
månatligt kvalitetsmått på sjukhusens resultat från den vård de erbjuder. Inklusionen av
patientdata i register är generellt accepterad i befolkningen, men det är inte helt klarlagt
huruvida detta beror på okunskap hos befolkningen eller ett aktivt eller passivt god-
kännande.

11
1 Introduction to the healthcare system
This chapter provides an overview of the Scottish healthcare system, including its histori-
cal roots, overarching structure, main actors and funding.
1.1 Overarching structure
The Scottish Cabinet Secretary for Health, Wellbeing and Cities Strategy has the highest
responsibility for health and health services, according to the overall policy of the Scottish
Parliament. Supported by officials at the Scottish Government’s Health and Social Care
Directorates, the ministers set healthcare policy, oversee the delivery of services by the
National Health Service (NHS) and regulate a small independent sector. Many healthcare
functions are delegated from the government to the 14 territorial NHS Boards (table 1),
which are responsible for planning and delivering all health services to the population in
their areas.
Figure 1. Structure of the Scottish healthcare system
1
1
Steel D, Cylus J. United Kingdom (Scotland): Health system review. Health Systems in Transition, 2012;
14(9): 1–150.
Scottish
Parliament
National health
bodies (9)
Local authorities
(32)
CHPs (36)
Operating
divisions (11)
Independent sector
Hospitals,
hospices, clinics
Hospitals
GPs, dentists,
pharmacists
Community
services
Scottish Government
Cabinet Secretary & Ministers
Health & Social Care Directorates
Territorial NHS
Board (14)

12
Table 1. NHS Scotland territorial health boards
2
Although there is no purchaser–provider split in Scotland and unified, integrated boards
combine these roles, regional health boards focus on strategic leadership and performance
management of the entire local NHS system. Their functions comprise:
• Strategy development – to develop a local health plan for its area, which addresses the
health priorities and needs of its resident population, and within which all aspects of
NHS activity, in relation to health improvement, acute services and primary care are
specified
• Resource allocation – to address local priorities by deciding how the funds allocated to
it are deployed locally to meet its strategic objectives
• Implementation of the local health plan and the local delivery plan
• Performance management of the local NHS system, including risk management.
Within each board, responsibility for delivery is delegated to operating divisions for acute
services and to community health partnerships (CHPs) for community and primary care
services. There is no purchaser-payer split; NHS boards directly employ staff working in
hospitals and in the community. The boards also manage, through CHPs, the independent
contractors working in primary care, such as GPs, dentists and community pharmacists,
and reimburse them for the work they do for the NHS.
A number of mechanisms are used to hold the NHS Boards accountable to the Scottish
Parliament for the health services they deliver. For example, reviews are made regularly by
the Parliamentary Health Committee, Audit Scotland and Healthcare Improvement Scot-
land within a broader National Performance Framework (see chapter 3).
2
Ibid.
Population
(2010)
Budget (2010/11)
£ million
Staff headcount
(2011)
NHS Ayrshire and Arran 366,900 589 10,289
NHS Borders 112,900 171 3,151
NHS Dumfries and Galloway 148,200 246 4,343
NHS Fife 364,900 519 8,571
NHS Forth Valley 293,400 406 5,867
NHS Grampian 550,600 704 13,932
NHS Greater Glasgow and Clyde 1,203,900 1,955 38,538
NHS Highland 310,800 497 8,546
NHS Lanarkshire 562,500 824 11,516
NHS Lothian 836,700 1,063 21,771
NHS Orkney 20,100 32 526
NHS Shetland 22,400 38 571
NHS Tayside 402,600 614 13,521
NHS Western Isles 26,200 60 1,023

13
In addition to the 14 territorial health boards, the NHS also consists of nine national health
bodies that deliver services that are best provided by a single organization, such as ambu-
lance transport, information, education and quality improvement. A brief description of the
roles and 2010/2011 budget for the national health boards is given in table 2.
Table 2. NHS Scotland national health bodies
3
1.2 Major actors
The Scottish Government and NHS Scotland are the two main actors in the Scottish
healthcare system. Budget, policies and strategic initiatives are set by the government,
while the NHS is responsible for the delivery of care to the population in its region, and
held accountable to the Scottish Parliament. Within the NHS, the Information Services
Division (ISD), Healthcare Improvement Scotland (HIS) and the Scottish Intercollegiate
Guidelines Network (SIGN) drive national quality improvement efforts. The ISD and HIS
in particular have increased their roles in quality improvement in recent years and also
collaborate closely on measurement, data collection, and analysis.
The Scottish Government1.2.1
As mentioned earlier, the Cabinet Secretary for Health, Wellbeing and Cities Strategy has
the overarching responsibility for healthcare in Scotland. The Scottish Government, sub-
ject to approval by the Scottish Parliament, determines how the overall budget should be
split between the NHS and other public services such as education and transport. The
3
Ibid.
Budget
£ million Description
Healthcare Improvement Scotland 17,5
Develops advice, guidance and standards; drives
improvement; scrutinizes and reports on performance
Mental Welfare Commission for
Scotland
3,7
Safeguards rights and welfare of people with learning
disabilities, mental illness or other mental disorders
NHS 24 58,5
Online and telephone-based information and advice
services
NHS Education for Scotland 399,4
Designs, commissions and quality assures education,
training and learning for NHS workforce
NHS Health Scotland 21,8
Develops and implements national programmes to
improve population health
NHS National Services Scotland 262,9
Provides a range of services, such as supplies, blood
transfusion, information and statistics and health
protection
National Waiting Times Centre 49,2
Runs the Golden Jubilee Hospital, receiving referrals
to reduce waiting times
Scottish Ambulance Service 216,4
Provides emergency ambulance and non-emergency
patient transportation
State Hospital Board for Scotland 74,7 Provides high security and psychiatric care

14
Cabinet Secretary and the Scottish Government’s Health and Social Care Directorates then
decide how to deploy the funds allocated for health and social care, and monitor their use.
The Scottish Government Health and Social Care Directorates have responsibility for
health and social care policy, management of the NHS, and oversight of social care ser-
vices. The directorates are headed by a director-general who is also chief executive of NHS
Scotland. In relation to health, the directorates are responsible for:
• Determining national objectives and policies for health protection, health improvement
and health services
• Setting targets and offering guarantees on behalf of patients
• Providing a clear statutory and financial framework for the NHS
• Holding the NHS to account for its performance against national priorities and targets
• Intervening when serious problems or deficiencies in service arise that are not being
resolved quickly enough at local level.
NHS Scotland1.2.2
NHS Scotland is the national and publicly funded healthcare provider. It was created in
1948, at the same time as the NHS in England and Wales. The formation of NHS Scotland
is based on the National Health Service (Scotland) Act of 1947, which was later repealed
by the National Health Service (Scotland) Act of 1978. As mentioned earlier, NHS Scot-
land is currently made up of 14 regional health boards and nine national health bodies. The
main parts of the NHS that drive quality work across Scotland are described in more detail
below.
Information Services Division (ISD)
ISD Scotland is part of the national health body NHS National Services Scotland. The ISD
collects a wide range of health-related administrative data on behalf of the NHS and has
been the source of Scottish national healthcare statistics for over 50 years. The data is used
to enhance decisions about healthcare in Scotland to improve the health of the Scottish
people. The ISD also publishes a wide range of data to inform the public about the quality
of Scottish healthcare. Finally, the ISD supplies HIS with national clinical data for
healthcare improvement analysis and projects. The ISD and HIS work particularly close
together on mortality data collection and analysis.
Healthcare Improvement Scotland (HIS)
HIS was formed in 2011 and replaced its predecessor Quality Improvement Scotland. HIS
is responsible for:
• Developing evidence-based advice, guidance and standards for effective clinical
practice
• driving and supporting improvements in health care practice
• providing assurance about the quality and safety of care through scrutiny and
performance reporting.
HIS’s focus on improvement and implementation sets it apart from its predecessor Quality
Improvement Scotland, which produced guidelines but did not engage in programs for

15
healthcare improvement. This has also led to an increased emphasis on measurements and
audits to follow up how guidelines are implemented.
Based on the standards it develops for care and treatment, HIS conducts reviews of per-
formance in each board. Boards complete a self-assessment questionnaire that is then vali-
dated by a visit undertaken by staff from other boards with experience of the service under
review and members of the public. HIS then produces and publishes a local report on each
visit and a national overview at the conclusion of each cycle. HIS does not have power to
ensure compliance with its standards or to enforce its recommendations, but its reports
have considerable authority and feed into the health and social care directorates’ perfor-
mance management process.
Scottish Intercollegiate Guidelines Network (SIGN)
The SIGN was formed in 1993 and has been part of HIS since 2005. The objective is to
improve the quality of healthcare for patients in Scotland by reducing variation in practice
and outcome through the development and dissemination of national clinical guidelines
containing recommendations for effective practice based on current evidence.
1.3 Private – public
Since the creation of the Scottish Parliament in 1999, the healthcare policy of the Scottish
Government has diverged from the rest of the UK and is today working to limit the role of
private actors in the healthcare system. The Scottish Government is not supportive of fur-
ther privatization in healthcare and has reduced the number of partnerships between the
NHS and the private sector.4
There is nonetheless a small independent healthcare sector
that includes both private and non-profit-making actors. As of today, the independent sec-
tor comprises:
• Seven acute medical and surgical hospitals (306 beds) offering inpatient, outpatient
and day-care services ranging from routine investigations to complex surgery
• Ten mental health hospitals and clinics (342 beds and 50 day-case places), providing
assessment, treatment and rehabilitation for children and young people with eating
disorders, people with learning disabilities, people requiring intensive psychiatric care,
and people with drug and alcohol problems
• 15 voluntary hospices (286 beds and 160 day-case places) providing specialist
palliative care on an inpatient, outpatient and day-care basis
• Two specialist clinics providing cosmetic and laser treatment.
With the exception of hospice care, the independent sector is funded mainly by private
insurance or charges paid directly by patients. Hospices have charitable status and do not
charge for their services; they receive a substantial part of their funding from the NHS. The
NHS also contracts to a limited extent with the private sector for the provision of certain
services to NHS patients. In 2010/11, NHS Scotland spent £65 million on services from
the private sector, equivalent to only 0.6 percent of total NHS spending.5
4
Guardian, Nov 2nd
, 2011: “Scotland keeps its NHS public” http://www.guardian.co.uk/healthcare-
network/2011/nov/02/scotland-england-nhs-snp-minimise-private-sector-role
5
14(9): 1–150.

16
1.4 Insurance system and funding
Since its inception, the aim of the NHS has been to provide access to healthcare to resi-
dents, irrespective of their ability to pay. All residents of Scotland, as well as residents of
other United Kingdom countries visiting Scotland, have access to Scottish healthcare. In
addition to public healthcare, some people are covered by private insurance, either paid by
their employer or by the individual, in order to obtain faster or other services than those
provided by the NHS. According to a 2012 study by the European Observatory on Health
Systems and Policies, 8.5 percent of Scots are covered by private medical insurance.6
The NHS is financed mainly through general taxation (76.2 percent) with a further 18.4
percent coming from the NHS element of National Insurance Contributions (NICs). The
remainder comes from charges and receipts, including land sales and proceeds from
income-generation schemes.
6
NICs are compulsory contributions paid by employers, employees and self-employed people on earned
income only. 10 per cent of total NIC payments are allocated to the NHS.

17
2 Initiatives for healthcare quality and follow-up
The changes in the healthcare system to increase the focus on quality can be described as
having been ongoing for about a decade. Around 10 years ago, government policy and the
media were mainly focused on access to healthcare in terms of waiting times and the year-
long queues that existed for some procedures. Scotland has since then been looking at
growth and investments in the healthcare sector, where substantial resources were invested
in the waiting times area.7
The Quality Outcomes Framework was introduced in the whole
of the United Kingdom as part of a revised contract for GPs that was intended to improve
quality in general practice in 2004.
However, the reforms are also described as a result of a global trend where a quality
movement swept the world in the mid-2000s, and this is also the time when the more per-
son-centered strategies are said to have begun to be implemented, partly as an incentive to
improve healthcare quality for patients and staff alike (where the debate is still on-going in
the U.K.)8
and partly as a strategy to improve cost-efficiency within the healthcare system.9
2.1 The Healthcare Quality Strategy for NHS Scotland
The Quality Strategy was enacted by the Scottish Government in 2010. It is sprung from
the Better Health, Better Care Action Plan enacted in 200710
, which made a series of com-
mitments to improve the health of everyone in Scotland and to improve the quality of
healthcare and healthcare experience. The quality strategy is intended to take the quality
dimension of Better Health, Better Care one step further to continue the pursuit of excel-
lence in healthcare, and has been developed in close cooperation with people working in
the NHS, patients and carers. The Quality Strategy is described as a key changer or catalyst
in Scotland, and provides the overarching context for prioritization of policy development
and improvement. At its core are three quality ambitions:
• Person-centered – mutually beneficial partnerships between patients, their families
and those delivering health services, which respect individual needs and values and
which demonstrate compassion, continuity, clear communication and shared decision-
making.
• Safe – there will be no avoidable injury or harm to people from health care they re-
ceive, and an appropriate, clean and safe environment will be provided for the delivery
of health care services at all times.
• Effective – the most appropriate treatments, interventions, support and services will be
provided at the right time to everyone who will benefit, and wasteful or harmful
variation will be eradicated.11
7
14(9): 1–150.
8
Guardian, Feb 28, 2013: “More than a broken leg: when patients and NHS staff really count as people”
(retrieved online March 1, 2013) http://www.guardian.co.uk/healthcare-network/2013/feb/28/patients-nhs-
staff-personalised-care
9
Guardian, Jan 17, 2013: “A bigger say in the NHS for patients - greater patient involvement in the health
service could lead to better quality care and more efficiency savings” (retrieved online Feb 6, 2013)
http://www.guardian.co.uk/healthcare-network/2013/jan/17/nhs-patients-bigger-say
10
Better Health, Batter Care: http://www.scotland.gov.uk/Resource/Doc/206458/0054871.pdf
11
Healthcare Quality Strategy NHS Scotland http://www.scotland.gov.uk/Resource/Doc/311667/0098354.pdf

18
Implementation of the quality strategy is seen as the way by which longer-term transfor-
mational challenges are addressed and, in the shorter term, greater efficiency and produc-
tivity are achieved. The strategy encourages whole system improvement through mutually
beneficial partnerships between clinical teams, the people in their care, and other national
organizations involved in healthcare delivery. To this end, it provides the context for all
subsequent statements of Scottish government policy on different aspects of health care.
Centralization and standardization of quality measurements across the NHS is seen as piv-
otal to achieving the goals of the quality strategy. To achieve this, a quality alliance in-
volving all key stakeholders will be established, tasked with overseeing the implementa-
tion of the quality strategy and ensuring whole-system integration and alignment. Initial
work is focused on ensuring that existing and new initiatives are appropriately aligned with
the quality ambitions, and that their impact on the ambitions is measured and monitored
accurately and consistently across the NHS. Examples of initial improvement interventions
include:
• Align the 2011/12 HEAT targets (grouped into 4 priority areas: Health improvement,
Efficiency, Access and Treatment Appropriate to Individuals) through the Quality
Strategy
• Develop a Quality Measurement Framework (section 3.5.1) underpinning the Quality
Ambitions with related high-level outcome indicators
• Establish governance responsibilities and procedures to support quality, and minimize
risks
• Ensure that national and local audit programs support the development of appropriate
indicators of quality
• Develop the Quality Improvement Hub, a partnership between Healthcare Improve-
ment Scotland (HIS), NHS Education for Scotland, the Information Services Division
(ISD), NHS Health Scotland and the Quality and Efficiency Support Team at the
Scottish Government12
2.2 Measuring subjective experiences of healthcare
The Healthcare Quality Strategy for NHS Scotland has a clear focus on patients’ subjective
experiences of healthcare and measureable output. The focus on patient experience is only
about two years old in terms of formalizing measures for systematic quality improvement
within this area; developing and implementing standard measures for the whole spectrum
of quality improvement in healthcare, and not just patient experiences, however, has been
an on-going process for a longer period of time. The creation of 11 quality measure
frameworks is one of the results of these processes. Six are already publically available and
the ISD have developed a website which will be launched in early summer 2013.
The focus was previously on patient complaints and The Patient Safety Programme man-
aged by the HIS is said to have brought about a real change in culture. The area has how-
ever now been extended to also comprise staff experiences, allowing them to learn from
others and encouraging them to comment on the system.
12
14(9): 1–150.

19
There has been a debate on “whistle blowers” as some staff has been described as “telling
on” their employers when the routines and work environment have failed, but procedures
have now been established for this. Comparisons can be made with the aviation industry
where the work environment has always encouraged people to “complain” and suggest
improvements as part of overall quality assurance work. There are multiple reasons behind
this new attitude to “complaining” within healthcare, but the ones with most leverage are
described as some critical clinical incidents and investigations following on these.
2.3 Public awareness of quality within the healthcare system
Three things are described as central to public awareness: waiting times, hospital cleanli-
ness, and safety work. The ISD publish hospital mortality rates (SMRs) monthly, but these
are not followed up regularly by the media and no hospital comparison statistics have been
made available to the public, except for the SMRs.
There may be an increasing incentive for linkage between primary and secondary care due
to changes in the health system in England, where the role of GPs in commissioning care
has increased13
. The patient has a choice on where to go for healthcare, and the registries
describing hospital outcomes become interesting in this context in terms of providing in-
formation to help decision-making, should results be regularly published and in demand.
However, interest in free choice is not described as very extensive in Scotland.
There has been some debate around the free choice option. People have objected to it be-
cause they think money spent on its administration could be used in a better way. Intro-
ducing choice is in general seen as a privatization attempt, which a majority of Scottish
voters do not support. There is more support for a national health service and the majority
of Scots still proclaim a collective perspective on social services and not privatizing such
services.14
There is also a strong awareness of socioeconomic differences in healthcare, both in utili-
zation of healthcare services and in healthcare output, where the government keeps a focus
on prevention, not least because of the demographic challenge, and where different initia-
tives have been introduced to even out inequalities (see paragraph 5.3). In addition, as for
the importance of registries on a macro level, the study on cancer survival is described as
having been very influential in bringing about healthcare changes in the whole of the U.K.
as well as in Scotland locally.
On a population level, the registries are mainly used to spot patterns and variations, hence
leading to initiatives to implement changes to improve the system so that the NHS, hospi-
tals and GPs can provide better care for the population at large. The aim as such is to make
small improvements for a large number of people, rather than using specific methods
mainly for preventing particular events with adverse outcomes.
In 2011, the Scottish government embarked upon an ambitious project to set up an online
system to give healthcare professionals access to a key snapshot of patient information,
using systems of clinical portals15
. The project aims to remove the need for clinical staff to
13
Guardian, March 22, 2011: “Scottish health secretary: England will end NHS as we know it”
http://www.guardian.co.uk/healthcare-network/2011/mar/22/scottish-health-secretary-england-ending-nhs
14
Guardian, Nov 2nd
, 2011: “Scotland keeps its NHS public” http://www.guardian.co.uk/healthcare-
network/2011/nov/02/scotland-england-nhs-snp-minimise-private-sector-role
15
Guardian, March 9, 2011: “Scotland to get patient 'snapshot' IT system - clinicians' portal to provide view
of patient information” http://www.guardian.co.uk/healthcare-network/2011/mar/09/scotland-spend-4m-it-
clinical-portal-snapshot-system

20
log on to multiple IT systems to obtain all the information needed for treatment. The sys-
tem is expected to cover more than a quarter of the Scottish population. The new system
will be used by doctors, nurses and other healthcare professionals across primary care and
acute care at a consortium of four Scottish health boards. The project is still ongoing.16
16
http://www.ehealth.scot.nhs.uk/?page_id=8

21
3 Information systems and registries
Information for tracking and improving healthcare quality is collected across the entire
Scottish healthcare system and spread out across several actors. The main players on a
national level are Healthcare Improvement Scotland (HIS), formed in April 2011, and the
Information Systems Division (ISD), both part of the NHS. A general note is to not con-
fuse national quality measurements and quality registries. Quality registries are very few in
Scotland (only three), while national measurements of quality are used frequently and sys-
tematically to improve healthcare, as detailed below.
Four overarching systems for measurement and information management are used to track
and improve healthcare quality in Scotland today. First of all, the government carries out
audits to evaluate the performance of the 14 NHS health boards. Second, national audits
are performed to measure and improve the quality of healthcare for selected diseases or
conditions. Third, specific quality improvement programmes, typically coordinated by the
HIS, can be initiated to drive improvements around a specific topic. Finally, Scotland has
three national disease registries. All four systems are detailed below.
3.1 Audits of NHS Boards
The Scottish government carries out biennial (annual until 2010) audits, also known as
accountability reviews, with each NHS board to evaluate the performance and quality of
the healthcare that it provides. During the review, government officials meet stakeholders
such as staff and patient representatives and review performance against the board’s local
delivery plan, and the HEAT targets and quality ambitions. Reviews are open to the public,
who may also ask questions, and the results are also publically available. Audits cover a
wide range of topics indicating the overall performance of the healthcare system, including
financial targets, referral patterns and whether providers meet quality criteria. Data col-
lected in the annual audits include measurements of clinical performance and efficiency,
access to healthcare, and financial performance.
HEAT Targets3.1.1
HEAT targets are measured nationally and reviewed with boards annually. The targets are
part of the wider performance management framework and national outcomes of the Scot-
tish government. Each NHS board’s local delivery plan contains an improvement trajec-
tory and a risk management plan showing how it will achieve the targets. The Scottish
government agrees the plan with boards and this then forms an annual “performance con-
tract”, and NHS boards are held accountable to the Scottish Government and Parliament
for achieving the HEAT targets. HEAT stands for:
• Health improvement for the people of Scotland – improving life expectancy and
healthy life expectancy;
• Efficiency and governance improvements – continually improving the efficiency and
effectiveness of the NHS;
• Access to services – recognizing patients’ need for quicker and easier use of NHS
services;
• Treatment appropriate to individuals – ensuring that patients receive high-quality ser-
vices that meet their needs.

22
The targets are always quantified to enable easy data collection, monitoring and compari-
son. Data is collected locally and then aggregated by the NHS health boards and then on a
national level. HEAT targets are reviewed each year and a new suite is published each
November. Once a HEAT target has been achieved it becomes a HEAT standard and
boards are expected to maintain it.
3.2 National audits
Second, national audits are performed to measure and improve the quality of healthcare for
selected diseases or conditions. As such, they only cover a select set of diseases or condi-
tions, rather than performance indicators for the entire healthcare system. Some diseases
and conditions have been audited on a national level for many years. The ISD is responsi-
ble for data collection, storage and analysis for these national audits. Some of the most
important national audits are the Scottish Audit of Surgical Mortality, the Scottish Trauma
Audit, the Scottish Stroke Care Audit, and the Musculoskeletal Audit.
Hospital Standardised Mortality Ratios (HSMR)3.2.1
In 2009, the Scottish Patient Safety Programme (SPSP) was established with the overall
aim of reducing hospital mortality by 15 percent by 2012. This was then extended to a 20
percent reduction by December 2015. Since December 2009, the ISD has produced
quarterly hospital standardized mortality ratios (HSMR) for all Scottish hospitals
participating in the SPSP, to enable them to monitor their progress on reducing hospital
mortality over time.
The HSMR is calculated by obtaining routinely collected deaths data and includes all pa-
tients who died within 30 days from hospital admission. As such, the HSMR includes
deaths that occur both in and out of hospital. The crude mortality data is then adjusted to
take account of some of the factors known to affect the underlying risk of death. It also
includes additional information and commentary on patterns of mortality over the longer
term and by key demographic factors.17
The Scottish Audit of Surgical Mortality (SASM)3.2.2
The Scottish Audit of Surgical Mortality (SASM) has been in existence since 1994 and
includes participation from all surgical specialties in Scotland with the exception of tho-
racic, cardiac and obstetrics. The audit aims to identify all deaths under the care of a sur-
geon that occur in hospital with each case undergoing a peer review process. SASM is
maintained by the ISD of NHS. The data is collected via an electronic web-based portal
which was launched in 2011. Data is submitted by the relevant surgeon, anesthetist, inter-
ventional radiologist or intensivist, after which it undergoes a peer review process carried
out by clinicians within the audited specialties on behalf of their colleagues.
SASM’s goal is to determine if there are any aspects of care that could have been im-
proved or whether the assessor/coordinator felt that the quality of care provided was sub-
optimal. Today, over 2,000 consultants participate and approximately 4,500 deaths are
reviewed every year.18
17
Hospital Standardized Mortality Ratios: http://www.isdscotland.org/Health-Topics/Quality-
Improvement/Quarterly-HSMR/
18
Scottish Audit of Surgical Mortality: http://www.isdscotland.org/Health-Topics/Quality-
Improvement/Scottish-Audit-of-Surgical-Mortality/

23
The Scottish Trauma Audit Group (STAG)3.2.3
The Scottish Trauma Audit Group (STAG) was set up in 1991 to audit the management of
seriously injured patients in Scotland and collected trauma data across all of Scotland until
2002, when it was believed to have achieved its aim. In January 2011, however, STAG
began auditing the management of trauma patients again.
The aim of STAG is to improve the management of seriously injured patients through
measurement, comparison and feedback. Data are collected by local audit coordinators
based at 20 hospitals throughout mainland Scotland.19
Scottish Intensive Care Society Audit Group (SICSAG)3.2.4
The Scottish Intensive Care Society Audit Group (SICSAG) has maintained a national
database of patients admitted to adult general Intensive Care Units (ICU) and High De-
pendency Units (HDU) in Scotland since 1995. SICSAG produces detailed information on
the management of critically ill or injured patients. In October 2006, SICSAG joined the
ISD.
The goal of SICSAG is to improve the care of critical care patients by systematic, compre-
hensive audits of their management and outcome. Some key objectives are to establish and
maintain a high quality validated dataset, identify evidence-based standards, identify qual-
ity indicators/minimum standards and monitor compliance, and collaborate with other
agencies to develop quality improvement initiatives.20
The Scottish Stroke Care Audit (SSCA)3.2.5
The Scottish Stroke Care Audit (SSCA) was established in 2002 and now includes all hos-
pitals managing acute stroke in Scotland. The SSCA is a national audit to check the quality
of stroke care delivered in Scottish hospitals and has since its inception helped to drive
improvements in stroke care which have contributed to a reduction in mortality rates and
improved outcomes for stroke patients.
The SSCA collects information on the number of people that have a new stroke, how long
it took the patients to get to the hospital, whether they went to a stroke unit, whether they
had a brain scan and when they began medical treatment, all to monitor and improve stroke
care across Scotland. The audit is an integral support for the care provided by every Scot-
tish NHS Board.21
Cancer Audits3.2.6
Regional (for the north, south-east and west of Scotland) cancer audits for sub-types of
cancer have been performed for some time22
. The mechanisms for a national cancer audit
have been investigated since 2008, when the government launched the Better Cancer Care
plan aimed at improving diagnosis, care and ultimately survival of cancer patients across
Scotland. Part of this plan is a commitment to develop cancer quality performance indica-
tors (QPIs) that will measure how good a service is and help to identify areas for im-
19
The Scottish Trauma Audit Group: http://www.isdscotland.org/Health-Topics/Quality-Improvement/Scottish-
Trauma-Audit-Group/
20
The Scottish Intensive Care Society Audit Group: http://www.isdscotland.org/Health-Topics/Quality-
Improvement/Scottish-Intensive-Care-Society-Audit-Group/
21
The Scottish Stroke Care Audit: http://www.isdscotland.org/Health-Topics/Quality-Improvement/The-
Scottish-Stroke-Care-Audit/
22
http://www.scan.scot.nhs.uk/HealthProfessionals/Audit/Pages/default.aspx

24
provement in the future. To achieve this, the Scottish Cancer Taskforce established the
National Cancer Quality Steering Group with responsibility for:
• Developing sets (approximately 10–15 indicators) of tumor-specific national QPIs
• Overseeing the implementation of the national governance framework that underpins
the reporting of performance against these national QPIs
The QPIs have been developed collaboratively with the three regional cancer networks,
ISD, and HIS. Work is also progressing to ensure that all tumor networks take part in the
national audit; however, this work has proven to be more resource intensive than originally
anticipated. When the cancer audit is up and running, which it is estimated to take place in
early 2014, all NHS Boards will be required to report against QPIs as part of the manda-
tory national cancer quality programme. The national cancer audit will be an improvement
to today’s data sets that are local, fragmented and with variations in collection practices
across the country. With the standardized QPIs, data will be collected uniformly and there-
fore comparable across Scotland. Ultimately, the goal of the quality program is to improve
the monitoring of outcomes and thereby improve patient care.23
Scottish Audit of Intracranial Vascular Malformations (SAIVM)3.2.7
The Scottish Audit of Intracranial Vascular Malformations (SAIVM) is a national clinical
audit that evaluates health services for patients who were first diagnosed with an intracra-
nial vascular malformation (IVM) in the years 1999 to 2003 and 2006 to 2010. SAIVM
assesses the quality of IVM care by comparing the care of diagnosed IVM patients to audit
standards developed by the SIGN and the SAIVM Steering Committee. Data collection
occurs through nationwide collaborative network between the four Scottish neuroscience
centers, other relevant specialists throughout NHS Scotland, patients, and GPs.
SAIVM’s objectives are to continue to recruit and follow-up a cohort of adults who are
newly-diagnosed with an IVM, to monitor current clinical practice, assess current practice
with reference to the audit standards, and ultimately improve practice.24
The Musculoskeletal Audit3.2.8
The Musculoskeletal Audit began in April 2009 and will provide data to complement the
work of various hospital time-to-treatment teams by identifying rate-limiting steps for or-
thopedic treatment. This will help orthopedic departments meet their December 2011 refer-
ral to treatment HEAT target of patients waiting no longer than 18 weeks from receipt of a
referral (e.g. from a GP) until starting treatment. Data is collected by local audit coordina-
tors at orthopedic clinics across Scotland.25
3.3 Quality improvement programs
Third, specific quality improvement programs, typically coordinated by the HIS, can be
initiated to drive improvements around a specific topic. One such program is the Scottish
Patient Safety Programme (SPSP) which has been operating since 2008. Patient safety is
also one of three key pillars of the Scottish Healthcare Quality Strategy. Other similar
23
The Cancer Audit: http://www.isdscotland.org/Health-Topics/Cancer/Cancer-Audit/
24
Scottish Audit of Intracranial Vascular Malformations: http://www.isdscotland.org/Health-Topics/Quality-
Improvement/SAIVM/
25
The Musculoskeletal Audit: http://www.isdscotland.org/Health-Topics/Quality-Improvement/The-
Musculoskeletal-Audit/

25
projects include the Scottish Patient Experience Programme (Better Together) and the Ef-
ficiency and Productivity Programme.
The Scottish Patient Safety Programme (SPSP)3.3.1
The Scottish Patient Safety Programme (SPSP) was launched in January 2008 as a five-
year program. Its primary aim is to reduce mortality and adverse events in Scotland’s acute
hospitals. This will be achieved by using evidence-based tools and techniques to improve
the reliability and safety of everyday healthcare systems and processes. The Programme is
coordinated by the HIS on behalf of the Scottish government. The objective of the ground-
breaking Scottish Patient Safety Programme is to steadily improve the safety of hospital
care country-wide.
A key element of the program is that staff caring directly for patients lead the changes and
are able to monitor their improvement through the collection of real-time data at individual
unit level. The SPSP has been successful in reducing mortality – up until December 2011
mortality was reduced by 9.5 percent across Scotland compared to 2008. Because of the
success of the program it has been extended to pediatric services and primary care.
In June 2012, the Scottish government announced phase two of the SPSP, which has a new
aim of reducing Hospital Standardised Mortality Ratios from 15 percent to 20 percent and
to provide 95 percent harm-free care by the end of 2015. This second phase began in
January 2013 and is focused on reducing infections, sepsis/VTE, and preventing falls and
pressure ulcers.26
Better Together3.3.2
Better Together was developed in 2008/09 and is Scotland’s national patient experience
programme, designed to support NHS boards, frontline staff and patients in improving
healthcare service. The program has an analytical work stream that sits within the Scottish
government and an implementation stream that sits within HIS since 2011.
The Better Together program focuses on three areas of work to improve patient experi-
ence: gathering feedback from people receiving hospital care, gathering feedback from
people who receive primary care from GP services, and supporting patient experience ac-
tivity across the country.27
Detect Cancer Early3.3.3
The Detect Cancer Early Programme was launched in February 2012 and is intended to
improve survival for people with cancer in Scotland by diagnosing and treating the disease
earlier. The overall aim of the initiative is to improve the five-year survival rate for people
diagnosed with cancer.
To achieve its purpose, the program aims to increase the proportion of people with stage
one disease at diagnosis, improve participation in national cancer screening programs, raise
the public’s awareness of the national cancer screening programs and also the early signs
and symptoms of cancer to encourage them to seek help earlier, and to strengthen data
collection and performance reporting. Marketing campaigns are used to raise public
26
The Scottish Patient Safety Programme: http://www.scottishpatientsafetyprogramme.scot.nhs.uk/programme
27
Better Together:
http://www.healthcareimprovementscotland.org/our_work/patient_experience/better_together/the_better_toget
her_programme.aspx

26
awareness of the program and encourage people to participate in screening initiatives and
see their doctor.28
A HEAT target has been introduced to measure and monitor the performance of the pro-
gram: increase the proportion of people diagnosed and treated in the first stage of breast,
colorectal, and lung cancer by 25 percent by 2014/2015.
3.4 Registries
There are three central national disease registries managed by the ISD in Scotland: the
Cancer Registry, the Renal Registry, and the MS Registry, with the national diabetes reg-
istry based in Dundee. The Scottish government has not been active in developing new
specific disease registries. Rather than develop isolated registries, where feasible, the gov-
ernment is seeking to link all data into one large database.
The Cancer Registry3.4.1
The Scottish Cancer Registry collects information on all new cases of primary malignant
neoplasms, carcinoma in situ, neoplasms of uncertain behavior, and benign brain and spi-
nal cord tumors arising in residents of Scotland. The registry has been collecting infor-
mation on cancer since 1958. Approximately 45,000 registrations are made annually in
Scotland and the cancer registration database currently holds over 1,400,000 records going
back to 1958. It was originally set-up to study the long-term effects of X-ray but has over
time evolved to its current use for monitoring disease development, to study the output of
cancer care in different parts of the country and the efficiency of healthcare.
For patients diagnosed up to 31 December 1996, a limited data set was collected. For pa-
tients diagnosed from 1st January 1997 onwards, an extended data set, including infor-
mation on stage and treatment, is collected for all patients. Data on ethnicity was also in-
cluded but is often not available and therefore has always been poorly recorded with over
50 percent of cases recorded as 'unknown' ethnicity. Since June 2006, the registry is also
able to derive geographical variables, such as council area and parliamentary constituency,
which are required for analysis.
Cancer Registry data are used for a wide variety of purposes which include public health
surveillance; health needs assessment, planning and commissioning cancer services; evalu-
ation of the impact of interventions on incidence and survival; clinical audit and health
services research; epidemiological studies; and providing information to support genetic
counseling and health promotion.29
The Renal Registry3.4.2
The Scottish Renal Registry collects and analyses data on patients who have been diag-
nosed with renal failure and other renal disorders in Scotland. Data has been collected from
Scottish renal units since 1960, which is the year when regular and routine renal replace-
ment therapy for end-stage renal disease began in Scotland. All renal units in Scotland
participate in the collection of data.
The registry has its roots in the routine collection of data performed by nephrologists in
Scotland, and was run formally by the Scottish Renal Association until 1999 when the
overall responsibility and funding for the registry was transferred to the ISD.
28
Detect Cancer Early: http://www.scotland.gov.uk/Topics/Health/Services/Cancer/Detect-Cancer-Early
29
The Scottish Cancer Registry: http://www.isdscotland.org/Health-Topics/Cancer/Scottish-Cancer-Registry/

27
The registry contains data on the number of patients with established renal failure (ERF)
and renal replacement therapy (RRT), their age, geographic location, treatment regimes,
kidney transplantation, survival rates, and so forth.
The registry’s data is used to improve the quality of renal services provided through audit
and peer review, plan for the provision of future renal services, undertake research includ-
ing the production of basic demography and epidemiology statistics, and support the
training of medical staff.30
The MS Register3.4.3
The Scottish MS Register has been collecting information on all new MS diagnoses since
January 2010. It is a national register hosted by the ISD. It collects data on the number of
new diagnoses, the demographic characteristics of patients, including age and geographic
location, and the patient’s journey from first symptoms to diagnosis. Since the registry was
initiated quite recently, it is still in the early stages of development and exploration.
Scotland’s comparatively high number of MS patients per capita, reportedly the highest in
the world, is the background for developing the register. The collection of national data
and formation of the register seeks to establish where MS patients are located, what clini-
cal and other support is required, and whether services are meeting published national
standards. As such, the register will be used to map the location of MS patients, develop a
culture of improvement that will result in quantifiable improvements in neurological ser-
vices for patients, and report on compliance with national clinical standards to improve
their services at a local level. 31
The Scottish Diabetes Register and Survey3.4.4
The national Scottish Diabetes Register (known initially as the Scottish Care Information-
Diabetes Collaboration (SCI-DC) database and now known as SCI-Diabetes)32
was initi-
ated in 2002 and is thought to be almost complete since 2005. It is based on daily down-
loads of data from all hospital clinics and all except about five of 1,000 general practices in
Scotland. The annual Scottish Diabetes Survey collates data submitted by all 14 NHS
Boards from the register and provides data on the number of people with diabetes, the ef-
fects on their health, and the progress being made to improve the delivery and outcomes of
care for diabetes. The goal is to use the data to compare prevalence, treatments, outcomes
and performance between the 14 health boards. Unlike the national audits listed in section
3.2, the Diabetes Survey is not operated by the ISD, but by the Scottish Diabetes Group, a
national steering group which coordinates the implementation of the Scottish Diabetes
Framework that was published in 2002 and of which the survey is one part.33
3.5 Other quality initiatives
The Quality Measurement Framework3.5.1
The Quality Measurement Framework is a new initiative as of 2011/12 and has its origins
in the national Quality Strategy. The Quality Measurement Framework provides a structure
30
The Scottish Renal Registry: http://www.isdscotland.org/Health-Topics/Quality-Improvement/Scottish-
Renal-Registry/
31
The Scottish MS Register: http://www.msr.scot.nhs.uk/
32
http://www.sci-diabetes.scot.nhs.uk/
33
Diabetes in Scotland: http://www.diabetesinscotland.org.uk/Default.aspx

28
for aligning the wide range of measurements that go on across the NHS in Scotland for
different purposes, describing how measurement helps to drive progress towards quality
ambitions and enabling demonstrations of improvement both locally and nationally.
The Quality Measurement Framework is divided into three levels: (1) Quality outcome
indicators, used for national reporting on longer term progress towards the quality ambi-
tions and the quality outcomes; (2) HEAT Targets, used to monitor the specific and short-
term priority areas for targeted action in support of the quality outcomes; (3) All other
indicators/measures required for quality improvement and performance management and
reporting, either by national programs or locally.
Six healthcare quality outcomes provide a description of the priority areas for improve-
ment in support of the quality ambitions. The six healthcare quality outcomes are:
1. Everyone gets the best start in life, and is able to live a longer, healthier life
2. People are able to live well at home or in the community
3. Healthcare is safe for every person, every time
4. Everyone has a positive experience of healthcare
5. Staff feel supported and engaged
6. The best use is made of available resources
Follow-up of the progress towards the six quality outcomes will be supported by eleven or
twelve quality outcome indicators that are currently being developed. As of February 2013,
six of the twelve quality outcome indicators were publically available. The NHS has de-
veloped a website for publishing data on progress and performance publically that will go
live in May or June 2013. Identifying the right indicators has been a process of rationaliz-
ing the data to find the useful data and get rid of the rest.
Primary care and general practitioners3.5.2
Quality work in Scotland has previously focused on hospitals, in part because GPs are
independent contractors rather than employed directly by the NHS boards. Today, how-
ever, GPs are becoming increasingly involved in quality improvement work across Scot-
land. For example, HIS is launching a patient safety program for primary care over the
spring of 2013, and the ISD are collecting prescription data from all GPs for monitoring
and analysis.
In contrast to hospitals, the quality framework for GPs, the Quality & Outcomes Frame-
work (QOF), includes a pay for performance element and is one of the main sources of
potential income for GPs across the UK. Participation by general practices in the QOF is
voluntary, but virtually all general practices in Scotland (99 percent) collect at least some
QOF data. The QOF measures a general practice's achievement against a set of evidence-
based indicators, with payments made to practices on the basis of their performance. Select
data is also published to allow the public to assess the quality of GP services in Scotland.
Surgical and Medical Profiles3.5.3
The Surgical and Medical Profile projects are both led by the ISD and HIS and part of a
wider process aimed at encouraging improvements in clinical care by making best use of
existing Scotland-wide data sources. The profiles are tools to be interpreted and used lo-
cally by those providing patient care in order to stimulate reflection on clinical services

29
and help them understand where services are working well and identify opportunities to
improve patient care. Each NHS Board is accountable for reviewing and, where necessary,
acting upon its own data.
The Surgical Profile project is a collaborative project led by HIS and the ISD, with support
from NHS Boards, the Royal College of Surgeons of Edinburgh, the Royal College of
Physicians & Surgeons of Glasgow, and a number of clinical specialty groups. The surgi-
cal profile presents a range of data about the surgical care provided by Scottish hospitals.
The surgical profile brings together data from a number of existing national data sources in
a format designed to make it easier for NHS Boards to use this information. The data
sources are:34
• Scottish Morbidity Records, in-patient only
• General Register Office for Scotland Deaths
• Notifications of abortions performed under the Abortion Act 1967
The Medical Profile project is also driven by the HIS and ISD and is based on the method-
ology developed for the surgical profiles project. The medical profile also brings together
data from a number of existing Scotland-wide data sources, including:35
• Scottish Morbidity Records, in- and out-patient
• General Register Office for Scotland Deaths
• Accident & Emergency datamart
• Scottish Renal Registry
• Quality Outcomes Framework
Scottish Coronary Revascularisation Register3.5.4
The Scottish Coronary Revascularisation Register, as opposed to the other registries and
national audits listed in this report, is not run by the NHS but by the Scottish Cardiac Soci-
ety. The register began in 1996 and collects data on all patients undergoing coronary artery
bypass grafting, percutaneous coronary interventions, and coronary angiography in Scot-
tish NHS hospitals. Data is collected by clinical, nursing, audit and administrative staff.
The information collected on each patient includes: (1) demographic characteristics, (2)
severity of cardiac disease, (3) drug therapy, (4) past medical and surgical history, (5) co-
morbid conditions and other risk factors, and (6) in-hospital complications. The infor-
mation enables clinicians in Scotland to monitor their own practice and compare it with
other hospitals.36
3.6 Data collection and maintenance
Historically, data collection and registry maintenance have been decentralized and driven
by hospitals and clinical networks. Since a couple of years back, however, the ISD has
taken over responsibility for running most national registries and audits. Today, three na-
tional registries – cancer, renal and MS – are run by the ISD but the diabetes register is
based in Dundee with data linkage to other national data managed by the ISD. The cen-
34
Surgical Profiles: http://www.isdscotland.org/Health-Topics/Quality-Improvement/Surgical-Profiles/
35
Medical Profiles:http://www.isdscotland.org/Health-Topics/Quality-Improvement/Medical-Profiles/
36
The Scottish Coronary Revascularisation Register: http://www.scottishcardiac.org/index.

30
tralization of management to the ISD is driven by a desire from the Scottish government
and the NHS to keep all data in one place and link all health data in one large data set for
more powerful analysis. For example, today the ISD can link prescription records to other
disease registries and build a virtual picture of several conditions and how they are gener-
ally treated. The key record in Scotland is the hospital discharge record, to which the other
records are linked, but this is still a work in progress.
The ISD is also responsible for managing data from HIS improvement programs, such as
the Patient Safety Programme, financial data, cost-efficiency, number of patients, national
audits, socio-economic data, prescription data, and so forth. However, the ISD does not
collect data on primary care, except for data collected under the Quality & Outcomes
Framework for GPs. Despite the move towards more centralization, data collection is still
largely a decentralized activity, mainly for practical reasons. The NHS health boards col-
lect data from hospitals and GPs in their region and then report the data to the ISD.
Measurements are initiated from a variety of organizations, including, but not limited to,
the government, HIS and local actors. The government carries out national, population-
based measurements, while the registries are disease-specific and not population-based.
Today, most measurement initiatives are driven by the government, HIS and the ISD in
collaboration, in-line with the increased centralization of data storage and analysis and the
overall focus on quality improvement in the healthcare system.
3.7 Data dissemination
The ISD is the hub for the vast majority of health data in Scotland, and the main body that
holds and disseminates data. For privacy reasons, the mechanisms for providing an analy-
sis based on the data are laxer than those for providing access to the data. It also varies
with who is asking for an analysis or access.
A member of the public can ask the ISD for analysis on an aggregated level under the
Freedom of Information Act, but the ISD will only perform the analysis if it is limited in
scope. Researchers need to seek funding to pay for the cost of analysis if they want the ISD
to do it for them.
Access to the data is generally reserved for researchers. Rules for accessing data also de-
pend on the original source of the data, even though it is now held by the ISD. All requests
have to be approved by the Privacy Advisory Committee, but some cases, such as access to
the Renal Register and Diabetes Register also require contact with that register’s board.
The historical basis of how the registries developed is the reason for this variation.

31
4 Conditions for data collection
This chapter aims at describing different aspects of the data collection process, such as
obstacles to collecting data, incentives for participating in data collection for quality regis-
tries or within health measurement, and public awareness of these matters.
Data is collected at all levels in the healthcare system in Scotland, but there are not yet any
clear routines or tools for linking primary care and secondary or tertiary care data in Scot-
land, although some initiatives are under way. The ISD collects most data on health ser-
vices in Scotland. ISD data is permanently linked in large databases which facilitates data
linkage within the healthcare system. However, it is described as a more difficult task to
link ISD data to data held outside of the organization.
4.1 Incentives for participating in data collection
Participation in register work, both in terms of collection and dissemination, is generally
accepted within the Scottish healthcare sector. There is no reimbursement for reporting
data to the registers or central institutions and no financial penalties if data are not re-
ported. However, the standardized mortality rates (SMR) and medical and surgical profiles
along with other audits are all centrally initiated by the government and used for compar-
ing quality in healthcare on a national level, and not taking part in those will inevitably
create suspicion towards those caregivers, which results in full participation from hospitals
in these initiatives.
In contrast to the hospitals, GPs have much more developed financial incentives to develop
quality as part of their reimbursement or pay is based on their own record data which
should mirror compliance with certain nationally set guidelines.37
These guidelines could
be on how to record data systematically, or how to perform certain routine checks, as in “at
least 90 percent of patients with diabetes visiting a GP should have their blood pressure
checked”.
There has reportedly been some debate around this system as it risks putting focus on cer-
tain diseases for which clear targets have been set, while some diagnoses do not have these
targets and hence those patients run an alleged risk of getting a less satisfying care. But in
defense of the system, it is also said to have diminished inequalities in health in that GPs
are now encouraged and steered towards attending to all patients in the same manner.38
GPs also receive points for reimbursement for keeping a registry of each disease (they are
free to form their own) but these data are not yet collated at population or national level.
Another incentive for participating in data collection and measurements is revalidation for
medical staff. Every five years, medical staff needs to prove their skills where among other
routines participation in audits is mandatory. There has reportedly been some internal re-
sistance regarding participation in audits, which are generally accepted among the staff,
but where surgeons are often found to have higher rates of (post-operative) mortality due
to the elevated risk associated with surgical procedures, and as such that particular part of
the staff does not think mortality rate follow-ups are quite fair, as they are being compared
37
http://www.isdscotland.org/health-topics/general-practice/quality-and-outcomes-framework/
38
https://www.york.ac.uk/media/che/documents/papers/researchpapers/rp34_doctor_behavior_under_a_pay_f
or_performance_contract_further_evidence.pdf

32
to general GPs whose treatments are more complex and not as direct when it comes to
deriving links to mortality.
4.2 Data quality, credibility and public awareness
As for collection of data within registries, the MS, cancer, renal and diabetes registries are
the only registries managed at national level. Some clinical groups run their own registries,
but these data are mainly collected by clinicians as opposed to data collected by the central
government.
Data quality is often described as a reason for variation in measurement output between
hospitals. Fluctuations in data quality have also been described as an obstacle to achieving
credibility in healthcare quality measurement, where critics have called upon cases where
lapses in data collection have been the reason behind identified lack of quality in some
hospitals. Today, trust in data quality is achieved through a number of different compari-
sons across various sources, where mainly the ISD analyzes the collected data and correct
matters if there is unexplained variation.
In Scotland, there is an understanding of the importance of having publically available data
so that politicians, media and members of public can hold their boards accountable, if re-
quired. The main data that are regularly published in the media and known to the public are
standardized mortality ratios (SMRs). Those are given to all health boards monthly and
any outliers will be followed up on. Survival data are often published in the newspapers
along with, for instance, cancer survival rates, infection rates in hospitals, health inequali-
ties and waiting times. The Chief Medical Officer’s annual report often receives media
attention above the areas mentioned above.39
The inclusion of patient data (anonymized) in registers is described as in general accepted
by the public, but it is not established whether this refers to limited awareness among pa-
tients or whether it is an active choice of acceptance. The ISD produces leaflets describing
how patient data is stored in hospitals, and there is also a leaflet on the Cancer Registry
and its purpose, but in general there seems to be little opinion among people, and the ISD
work according to implied consent – patients have the option of opting out of participating
but very few do so actively.
4.3 New initiatives in data collection and data linkage
In general, the national strategy is to try and link existing records together with added fi-
nesse, rather than set up new registries. There is an ongoing process to develop and imple-
ment quality performance indicators (QPIs) for facilitating collection and linkage of data
for healthcare improvement. Another purpose of this initiative is to avoid large variations
in how data are collected across the country. The QPIs are planned to be implemented by
early next year but already exist for some diagnoses, such as cancer.40
There is also a new IT strategy under way (to be published soon by the ISD) which is
based on linkage of administrative records. Isolated registries are generally not looked
upon as either very useful or interesting, but with the new strategy, hospital discharge data
can be linked with, for instance, death certificates.
39
http://www.scotland.gov.uk/Publications/2011/12/14120931/0
http://www.scotland.gov.uk/Publications/2012/12/7521
40
http://www.healthcareimprovementscotland.org/programmes/cancer_care_improvement/cancer_qpis.aspx

33
The CPRD (the Clinical Practice Research Datalink)41
is primarily a UK initiative which
aims to link primary care data with secondary data in a large network42
. Institutes who
choose to participate receive funding in return and it is planned to be accessible, at a very
high cost, to universities, pharmacy companies and other actors with research interests. But
although this particular register is updated on a daily basis and covers 99 percent of the
population, the CPRD at large cannot be said to be population-based. The NHS in Scotland
is a central funder of the CPRD but there is still work to be done on clearing rules about
data ownership and Scotland has expressed some resistance towards providing the NHS
with patient data in a commercial sense.
Another initiative for facilitating use of data is the Scottish Health Informatics Programme
(SHIP)43
, which is still under way. It was initiated by researchers but receives good support
at governmental level. The SHIP model is among other things a way of providing infor-
mation to relevant industries such as pharmaceutical companies without disclosing sensi-
tive patient information, but it is also a help for researchers aiming to link several data
sources. Linking of such data is complicated in Scotland, as there is no central committee
approving the use of personal registration numbers linked to various registers. Previously,
researchers have needed to contact up to 35 different people on different levels to obtain
approval of such use of data. Today, the diabetes register is the only example of a national
population based database that integrates primary and secondary care data in Scotland.
Further, using non-healthcare data (education, income) is not very common among re-
searchers and linkage of such data with healthcare registries is described as very compli-
cated, as this requires permission from multiple bodies, with no centralized board for ap-
proval. The National Privacy Committee is trying to promote SHIP for better sharing of
data that could be used to help run a local authority and for research purposes as well. The
SHIP program tries to develop guidelines for how data should be stored and the question of
data ownership has yet to be resolved also for this project.
4.4 Major relevant infrastructures
Apart from non-governmental initiatives such as the CPRD and the SHIP as presented in
the previous chapter, the major infrastructure for data collection and analysis is Health
Improvement Scotland (HIS). Please see chapter 1 or 3 for more details of this actor.
Another major infrastructure for data collection and data analysis is provided by the NHS
Scotland Quality Improvement Hub44
. This is a national collaboration among special health
boards and the Scottish Government Health Directorates which aims to support NHS
boards with implementation of the Healthcare Quality Strategy (2010) through effective
partnerships between the collaborating organizations. The collaborating organizations are:
• Healthcare Improvement Scotland
• NHS Education for Scotland
• Information Services Division , NHS National Services Scotland
41
Department of Health, UK (October 2011)."Launch of the Clinical Practice Research Data Link".
http://www.dh.gov.uk/health/2011/10/cprd-launch/.
42
Please see the chapter on England for more information about the CPRD.
43
Scottish Health Informatics Programme: http://www.scot-ship.ac.uk
44
http://www.qihub.scot.nhs.uk/default.aspx

34
• NHS Health Scotland
• Quality and Efficiency Support Team at The Scottish Government
The NHS Scotland (NHSS) Quality Strategy builds on existing policy and strategy docu-
ments such as Better Health Better Care and Leading Better Care and was endorsed by the
Scottish Parliament in May 2010. The Quality Strategy challenges NHS Boards to coordi-
nate and pool resources in order to meet its aspiration of improving the quality of
healthcare in Scotland. Development of the hub is seen as a three-year program, with
Healthcare Improvement Scotland acting as the lead organization. The partnership ap-
proach aims to align and integrate quality improvement activities across NHS Scotland.
The hub also aims to draw on the distributed expertise of others, such as healthcare staff
trained in quality improvement within NHS boards, to help bring quality improvement
closer to staff working in clinical settings. The hub will further provide technical advice,
support and development in the use of improvement science and will assist with the design
of improvement programs. The collaboration manages their contribution through four key
work-streams:
• Implementation support that is flexible and responsive;
• Education and learning opportunities that are accessible and relevant;
• Measurement for quality improvement that is meaningful; and
• Facilitation of quality improvement networks for NHS staff.
Quality Improvement National Reporting Tool4.4.1
Information Services Division (ISD) as part of the hub collaboration is tasked with devel-
oping and maintaining a national reporting tool that will support the measurement and
monitoring of progress of a range of quality improvement indicators and outcomes. The
reporting tool will be an integral part of the hub and will initially provide support to the
Scottish Patient Safety Programme and the Leading Better Care – Clinical Quality Indica-
tors Programme. The system will replace some of the functionality currently available
within the Institute of Healthcare Improvement (IHI) Extranet but the key functions will be
to extract data electronically direct from local Health Board Quality Improvement Systems
and provide Health Boards and other key stakeholders with a series of predefined standard
reports.
Quality Measures Framework4.4.2
ISD are committed, through the Quality Strategy, to simplifying and streamlining the range
of measurements which exist across NHS Scotland (NHSS) to ensure that maximum value
is obtained from the investment in data collection and measurement. The ISD are currently
helping to develop the Quality Measures Framework to support the definition of healthcare
quality described by the three healthcare quality ambitions (Person-centered, Safe, and
Effective). These ambitions will be tracked by a small number of high-level measures
combining patient and staff reported experiences and outcomes as well as clinical out-
comes and measures of patient safety.
The twelve potential high-level measures are currently being developed. The ISD has
agreed to collect and analyze information in respect of these measures and report on them
on a quarterly basis. While some measures utilize data from established sources, three po-

35
tential measures require new data collections (i.e. Patient Reported Outcomes Measures,
Early Years Measure) or projects to initiate new data submissions to the ISD (Adverse
Events).
The statistics relating to GP and dental services are collated via an aggregated annual re-
turn of the total number of complaints made against family health services in the previous
financial year. To promote consistency of recording practices, the ISD rolled out revised
definitions and codes nationally in 2008.

36
5 Use of data
This chapter discusses various aspects of data use, for instance whether it affects funding,
priorities made within the healthcare system, improvement of healthcare, or research.
To begin with, there is a distinction to be made between quality assurance and quality im-
provement. Healthcare Improvement Scotland are interested in measuring and monitoring
a specific data set for a specific purpose and then implementing changes that lead to im-
provement. The Information Services Division works otherwise and can for instance iden-
tify unexplained variations in healthcare quality across Scotland, for example manifested
by high mortality rates in specific hospitals and areas. This is described as a quality assur-
ance process separate from the HIS work. The ISD analyses, providing quality assurance,
then feed into the implementation of healthcare improvement by the HIS, depending on the
identified demand.
However, in general, the ISD is the main data collector and analyst serving the NHS (gov-
ernment). The ISD can design their own registries (or compilations of data) upon request
and depending on demand. As part of the National Statistics Framework, some results are
routinely published every year. The ISD also deals with parliamentary questions where
ISD staff draft answers for parliament. The ISD also channels data to HIS for specific im-
provement programs. Members of the public can also request information, as can other
agencies (including the media, for example for investigating individual hospitals). Finally,
specific research topics can be addressed by the ISD, such as (currently) health effects of
nuclear radiation.
5.1 Cost-efficiency and competitive measures
Comparative data are usually not used as a lever towards increasing hospital care quality.
Scottish patients can move freely between health boards, but there is no great motivation to
do so as there is less emphasis on competition as a lever compared to England which is
more active in terms of privatization processes. Media generally do not publish any audit
data but tend to focus on SMRs, which are a topic of discussion in local groups on a clini-
cal level.
As an example, diabetes has been studied over the past 10 years for comparison between
the different Health Boards (14 in Scotland) and how well they do in terms of treating dia-
betes in different parts of the country. Every year, all the board members meet to discuss
quality in terms of outputs for the different Health Boards. There could be three major
national audit groups divided by hospital or by Health Board assigned to study for instance
child cancer treatment output.
The ISD use a data collection system to map hospital care costs and they have developed a
strong system for tracking surgery costs for instance. These costs can be linked to particu-
lar diagnoses by linking data to other health data. These financial data can also be used for
planning purposes. Scotland has four health colleges which also provide regional tertiary
specialty care centers and sometimes patients need to be referred to other hospitals and
ISD data are then used to plan for such referrals.
There is also planning of investments in healthcare equipment such as radiotherapy, where
forecasts are made based on population data (the ISD use models to calculate how many

37
radiotherapy machines they will need in the future and this can be linked to demographic
models).
5.2 Access to healthcare
Access to healthcare is measured by the ISD with the help of a number of other state actors
for different population groups on basis of socio-economic factors. Inequalities in health
outcomes can be addressed based on these analyses. One consequence of this is a recently
launched project where quality improvement mechanisms are used during children’s first
five years, in order to address problems of inequality in healthcare.
Through analyses of these data, the ISD has successfully discovered patterns and issues in
relation to patients’ healthcare-seeking behavior. For instance there is the discovery that
cancer patients in general have higher mortality rates in the UK than in Sweden. This has
proven to be less of a quality of care issue, but rather an issue of at which point in time
patients seek care and are diagnosed. People from lower socio-economic groups tend to
seek care at a later stage than people with higher socio-economic status, and are thus in a
more adverse condition already when they enter the healthcare system. These discoveries
have led to some key policy initiatives where the NHS actively tries to address people who
seek care too late to detect cancer early.
The Scottish Public Health Observatory also produces comparisons of data within Scotland
and with other countries 45
5.3 Patient safety
NHS Boards and other NHS organizations submit summarized information about com-
plaints they receive to ISD Scotland. The data covers all formal written complaints re-
ceived by Hospital and Community Services, Family Health Services and Special Health
Boards. These data are validated by the ISD and checked with the Health Boards for fol-
low-up.
5.4 Research
Secondary data registries (cancer and diabetes etc.) are regarded as a national resource and
research networks can provide access if a certain researcher is in need of this. (See also
chapter 4.2) Most registries are hosted by the ISD and the Privacy Advisory Committee
where access to the renal registry previously demanded contact with that register’s board,
and the same went for the diabetes registry (different national boards).
GP data for the Quality Outcomes Framework are not presented by age or sex and are
mainly collected for the purpose of evaluating how they stand in relation to other GP prac-
tices – it is more a tool for supporting the system of pay-per-performance than for provid-
ing data for researchers. However, projects are underway to try and facilitate access to
primary care data for researchers (see chapter 4.2). There are about 1,000 different prac-
tices in Scotland and a centralized data collection system using the same records or param-
eters is still being worked out. Today, the diabetes register is the only example of a na-
tional population-based database that integrates primary and secondary care data in Scot-
land.
Prescription records are also available and could be linked with other registers to construct
a virtual picture of certain conditions and how they are treated.
45
http://www.scotpho.org.uk/

38
Use of Cancer Registry data is described as very extensive. The fundamental use is to
monitor the risk of cancer in the population and to carry out epidemiological studies of
cancer, but data also feeds into technical calculation, such as assessment of quality of care,
monitoring and evaluating screening programs, calculating family risk of cancer, and for
health promotion purposes.
5.5 Data ownership, privacy and integrity
Technically, the data belong to the Minister of Health. At the same time, the ISD operate
under a Data Protection Act, which requires that any set of data has an assigned "data con-
troller". In the case of the national registries, the ISD (or the parent body NHS Scotland) is
legally responsible for maintaining confidentiality and data security.
Due to the Freedom of Information Act, a member of the public or a researcher can enjoy
similar services from the ISD when it comes to asking for data on a certain matter, and
even have analyses carried out by ISD staff on an aggregated level. But in cases of larger
or more in-depth analyses, interested parties need to seek funding and go through the rou-
tines with the Privacy Advisory Committee and collect ethical approvals to achieve access
to the data. The Privacy Advisory Committee (consisting of lay people, researchers, and
representatives of health services) advise the Cancer Registry and others on when it is ap-
propriate to undertake new record linkages and release of data to researchers. The registry
as such does not provide open access and there is an element of bureaucracy involved in
receiving data, but the registries are not closed by any means.
In Scotland, there is an understanding around the importance of having publically available
data so that politicians, media and members of the public can hold their boards to account,
if required. The inclusion of patient data (anonymized) in registers is described as in gen-
eral accepted by the public, but it is not established whether this refers to limited aware-
ness among patients or whether it is an active choice of acceptance.
The ISD produces leaflets describing how patient data is stored in hospitals, and there is
also a leaflet on the Cancer Registry and its purpose, but in general there seems to be little
opinion among people. Survival data are often the only thing published in the newspapers
and there is no real debate on the quality of healthcare in aspects other than waiting times.

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