Appendices
Source: data.gov.uk (2023-12-18)

PICANet Annual Report 2020-2022. Paediatric Intensive Care Audit - This data contains information on all admissions to Paediatric Intensive Care units in the UK and Ireland 2020-2022.

Appendices 
Data collection period:  
January 2020 – December 2022 
Published 2023 
 
Paediatric Intensive Care  
Audit Network 
 
 National Paediatric Critical Care Audit  
 
State of the Nation Report 2023 

 
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PICANet State of the Nation Report Appendices 2023 
 
Contents 
 
Acknowledgements................................................................................................................3 
Glossary ................................................................................................................................4 
Organisation Key ...................................................................................................................5 
Background and participating organisations ..........................................................................6 
Governance ...........................................................................................................................6 
Methods.................................................................................................................................7 
How we present our results ...................................................................................................9 
Important notes ....................................................................................................................10 
Links with the clinical community .........................................................................................13 
Patient and Public Involvement ............................................................................................13 
Participating Organisation & Unit Characteristics 2022 ........................................................14 
Clinical Advisory Group Membership 2020 - 2022 ...............................................................17 
Steering Group Membership 2020 - 2022 ............................................................................19 
Data Collection Form in use 2022 – Referral .......................................................................25 
Data Collection Form in use 2022 – Transport .....................................................................26 
PICANet Information Leaflets for Families and Carers 2022 ................................................28 
PICANet Information Leaflet for Children 2022 ....................................................................32 
PICANet Privacy and Fair Processing Statement ................................................................36 
Publications & Abstracts 2020-2022 ....................................................................................41 
Data Access Requests Fulfilled (sent to applicant) January 2022 - December 2022 ............46 
 
Published in the UK by the Paediatric Intensive Care Audit Network (PICANet). This work is copyright. Apart from any 
use as permitted under the Copyright, Designs and Patents Act 1988, no part may be reproduced by any process 
without permission from PICANet. 
Requests and enquiries concerning reproduction rights should be directed to PICANet at:  
PICANet , Leeds Institute for Data Analytics, School of Medicine, University of Leeds, Clarendon Way, Leeds, LS2 9J  
Telephone: xx-xxxx-xxxx ∙ Email: xxx@xxx.xx  
 
In all cases PICANet must be acknowledged as the source when reproducing or quoting any part of this publication. 
Please use the following format when citing this report: Paediatric Intensive Care Audit Network State of the Nation 
Report 2023 (published December 2023): Universities of Leeds and Leicester. 
For this report content is © 2023 Healthcare Quality Improvement Partnership (HQIP) 
 

 
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PICANet State of the Nation Report Appendices 2023 
Acknowledgements  
The Paediatric Intensive Care Audit Network (PICANet) gathers information on all patients 
admitted to paediatric intensive care units (PICUs) in the United Kingdom and Republic of 
Ireland, in conjunction with specialist paediatric transport services (SPTS).  
We are indebted to the efforts of all of the administrative staff, nurses and doctors who support 
and contribute to PICANet from their PICUs and SPTS. We are particularly grateful for 
everyone’s support and contributions over the past three years given the significant challenges of 
the COVID-19 pandemic. 
PICANet continues to rely on the expertise and support from the Paediatric Critical Care Society 
(PCCS), the PICANet Steering Group and members of the Clinical Advisory Group who provide 
an essential link between PICANet and the clinical care teams. We would like to acknowledge 
this support, which enables the PICANet audit to continue to be a success.  
The PICANet National Paediatric Critical Care Audit (NPCCA) is commissioned by the Healthcare 
Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient 
Outcomes Programme (NCAPOP), the Welsh Health Specialised Services Committee (WHSSC), 
NHS Lothian/NHS Greater Glasgow and Clyde, the Royal Belfast Hospital for Sick Children, the 
National Office of Clinical Audit (NOCA) for the Republic of Ireland and HCA Healthcare UK.  
 
 

 
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PICANet State of the Nation Report Appendices 2023 
Glossary 
 
CAG 
Clinical Advisory Group 
CHI 
Community Health Index 
GDPR 
General Data Protection Regulation 
CYP 
Children and Young People 
HD 
High Dependency 
HQIP 
Healthcare Quality Improvement Partnership 
HRA CAG 
Health Research Authority Confidentiality Advisory Group 
HRG  
Healthcare Resource Group 
IC 
Intensive Care 
ICB 
Integrated Care Board 
NCAPOP 
National Clinical Audit and Patient Outcomes Programme 
NHS 
National Health Service 
NOCA 
National Office of Clinical Audit 
NPCCA 
National Paediatric Critical Care Audit 
PCCS 
Paediatric Critical Care Society 
PIC 
Paediatric Intensive Care 
PICANet 
Paediatric Intensive Care Audit Network 
PICS 
Paediatric Intensive Care Society (now PCCS) 
PICU 
Paediatric Intensive Care Unit 
PIM3 
Paediatric Index of Mortality 3 
RSPRT 
Resetting Sequential Probability Ratio Test 
ROI 
Republic of Ireland 
SG 
Steering Group 
SMR 
Standardised Mortality Ratio 
SPTS 
Specialist Paediatric Transport Services 
UK 
United Kingdom 
WHSSC 
Welsh Health Specialised Service Committee 
 
 
 

 
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PICANet State of the Nation Report Appendices 2023 
Organisation Key 
 
 
 
A 
Addenbrooke's Hospital, Cambridge 
C 
Noah’s Ark Children’s Hospital for Wales, Cardiff 
D 
Royal Manchester Children’s Hospital 
E1 
Great Ormond Street Hospital, London (PICU/NICU) 
E2 
Great Ormond Street Hospital, London (CICU) 
F 
Evelina London Children’s Hospital 
H 
King’s College Hospital, London 
I 
Leeds Children's Hospital 
K2 
Freeman Hospital, Newcastle upon Tyne 
K3 
Great North Children’s Hospital, Newcastle upon Tyne 
L 
Royal Stoke University Hospital 
M 
Nottingham Children’s Hospital, Queens Medical Centre, Nottingham 
N 
John Radcliffe Hospital, Oxford 
O 
Royal Brompton Hospital, London 
P 
Alder Hey Children’s Hospital, Liverpool 
Q 
Sheffield Children’s Hospital 
R 
Southampton Children’s Hospital 
S 
James Cook University Hospital, Middlesbrough (not included in key metrics) 
T 
St George’s Hospital, London 
U 
St Mary’s Hospital, London 
V 
Birmingham Children’s Hospital 
W 
Bristol Royal Hospital for Children 
X2 
Leicester Royal Infirmary CICU  
X3X1 
Leicester Royal Infirmary CPICU (previously Glenfield Hospital, Leicester)  
Y 
Royal Hospital for Children and Young People, Edinburgh 
Z 
The Royal London Hospital 
ZA 
Royal Hospital for Children, Glasgow 
ZB 
Royal Belfast Hospital for Sick Children 
ZC 
Children's Health, Ireland, Crumlin formerly Our Lady’s Children’s Hospital, Crumlin, Dublin 
ZD 
Children's Health, Ireland, Temple Street, formerly Temple Street Children’s University Hospital, Dublin 
ZE 
Harley Street Clinic, London (not included in key metrics) 
ZF 
The Portland Hospital, London 
T001 
Children’s Acute Transport Service (CATS) 
T002 
Embrace: Yorkshire & Humber Infant & Children’s Transport Service 
T003 
North West and North Wales Paediatric Transport Service (NWTS) 
T004 
South Thames Retrieval Service (STRS) 
T005 
KIDS Intensive Care and Decision Support 
T008 
Southampton Oxford Retrieval Team (SORT) 
T010 
Northern Ireland Specialist Transport and Retrieval (NISTAR) Paediatric 
T020 
Scotland Specialist Transport and Retrieval (ScotSTAR) 
T022 
Irish Paediatric Acute Transport Service (IPATS) 
T024 
Wales and West Acute Transport for Children (WATCh) 
T026 
North East Children’s Transport and Retrieval Service (NECTAR) 
T027 
Children’s Medical Emergency Transport Service (CoMET) 
T028 
Heart Link ECMO Children's Service (included in Tables & Figures only) 
T032 
Paediatric and Neonatal Decision Support and Retrieval Service (PaNDR) 

 
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PICANet State of the Nation Report Appendices 2023 
Background and participating organisations 
PICANet was established in 2002 with funding from the Department of Health and started 
collecting data from English and Welsh paediatric intensive care units in November 2002. The 
PICUs at the Royal Hospital for Sick Children, Edinburgh (now Royal Hospital for Children and 
Young People) and the Royal Hospital for Children, Glasgow started submitting data in 
December 2004 and April 2007 respectively. The Royal Belfast Hospital for Sick Children joined 
in April 2008 and Children's Health, Ireland, Crumlin and Children's Health, Ireland, Temple 
Street, both based in Dublin, have submitted anonymised data to PICANet since January 2009 
and March 2010, respectively. The Harley Street Clinic PICU started contributing data in 
September 2010, and the PICU at the Portland Hospital from June 2013, allowing both these 
non-NHS units to compare their performance against the national benchmark provided by 
PICANet. The Harley Street Clinic PICU permanently closed in March 2020.  
During the reporting period there were 32 PICUs and 13 specialist paediatric transport services 
(SPTS) submitting data to PICANet. The audit covers the whole of the UK and the Republic of 
Ireland. A full list of participating PICUs can be found in the Participating Organisation & Unit 
Characteristics 2022 section. Changes to participation are detailed in the Important notes section. 
 
 
Governance 
PICANet continues to receive support from the NHS Health Research Authority Confidentiality 
Advisory Group (HRA CAG) to collect personally identifiable data without consent on all patients 
accepted for referral, transported, or admitted to paediatric intensive care. Most patients are 
comprised of infants, children and young people although on occasion may include older adults. 
The HRA CAG references are: 21/CAG/0090 (non-research) and 21/CAG/0098 (research). 
See the HRA CAG register of approvals here: https://www.hra.nhs.uk/planning-and-improving-
research/application-summaries/confidentiality-advisory-group-registers/  
The Secretary of State for Health and Social Care, having considered the advice from the HRA 
CAG, has granted PICANet’s clinical audit an exemption from the National Data Opt-Out 
(England). 
Ethics approval for the PICANet research database has been granted by the East Midlands – 
Derby Research Ethics Committee, ref. 18/EM/0267. 
PICANet have approval from NHS Scotland’s Public Benefit and Privacy Panel for Health and 
Social Care (HSC-PBPP) for NHS Scotland data for use by PICANet. The reference is 1819-0107 
Feltbower. 
PICANet supports transparency in its data processing and has patient information sheets and 
posters on display in PICUs and SPTS. A Privacy Notice and Fair Processing Statement on our 
website outlines the legal basis for processing of data under the General Data Protection 
Regulation (May 2018). Details can be found at https://www.picanet.org.uk/about/policies/. 
PICANet receives support and advice from our dedicated Clinical Advisory Group (CAG) drawing 
on the expertise of doctors and nurses working within the speciality and a Steering Group (SG), 
whose membership includes health services researchers, representatives from the Royal 
Colleges of Paediatrics and Child Health, Nursing and Anaesthetics, parent/ carer 
representatives and commissioners. For a full list of CAG and SG members, see Clinical Advisory 
Group Membership 2020 – 2022 and Steering Group Membership 2020 - 2022. Additional 
support from the clinical community is provided through the UK Paediatric Critical Care Society. 
 

 
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PICANet State of the Nation Report Appendices 2023 
Methods 
Basic methodology 
Most critically ill children who need complex clinical care and life support are treated in Paediatric 
Intensive Care Units (PICUs). These children may have had complex surgery, an accident or a 
severe infection and may arrive in the PICU from an operating theatre, emergency department or 
from a hospital ward. In some cases they may have been transferred from another hospital and, 
occasionally, admitted directly from home. 
The NPCCA collects personal, organisational and clinical data on all children with a clinically 
determined need for paediatric intensive care in the UK and Ireland, to compare outcomes and 
activity between PICUs, SPTS, health regions and nations. 
Data are stored on a secure database. Each organisation can view and download their own data, 
reports on their data quality and activity as well as comparative national data. The annual State of 
the Nation report includes a summary of what has happened to children admitted to PICU 
including why they were admitted, where they were admitted from, how long they stayed, what 
treatments they received and their outcome at the time of discharge. Comparisons between 
PICUs are made to assess how well they perform against established clinical standards and 
guidelines. 
In addition to the annual report, PICANet provides technical and statistical support for the use of 
its data for local audit and research, regional and national commissioning, national and 
international research and to provide baseline information for clinical intervention trials. 
Data collected 
PICANet collects three core datasets: 
Admission data contains demographic details of each child including their name*, date of birth**, 
NHS/CHI number, address* and ethnic group; it also records where children are admitted from, 
their date of admission and clinical diagnoses, some physiological parameters on admission 
including blood gases, blood pressure, medical history and ventilation status. Data on outcome 
and discharge details are included. The medical interventions received on each day by each child 
are recorded as part of the audit and to help NHS organisations in England to supply information 
on the cost of their activity. 
Referral data for all children where clinicians agree a paediatric intensive care bed and/or 
paediatric intensive care transport is required includes details of the referring hospital, 
demographic details of the child, grade of the referring doctor or nurse, the outcome of the 
referral, the transport team involved and the destination PICU. 
Transport data for all children transported to a PICU from their original admitting hospital or who 
are transported by a specialist PIC transport service but are not admitted to a PICU includes 
patient details as well as information about their presenting physiology. Details of the composition 
of the transport team, journey times, any interventions carried out and critical incidents are also 
recorded. 
* Not collected from Northern Ireland or the Republic of Ireland 
** Limited to month and year for Northern Ireland 
Data submission and storage 
Data are submitted by individual PICUs prospectively, using our secure web-based data 
collection application called PICANet Web. Data submission can involve direct entry or an upload 

 
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PICANet State of the Nation Report Appendices 2023 
of a data file from an existing clinical information system. PICANet provides full documentation on 
data definitions, which have been developed in collaboration with our Clinical Advisory Group, as 
well as technical specifications for IT and database professionals. In addition, standardised data 
collection forms are supplied to all organisations where there is no in-house provision for data 
collection. 
All data submitted is stored in the Leeds Analytic Secure Environment for Research (LASER) 
system. All data at rest in the LASER system is encrypted to AES-256 Bit encryption. 
Data quality, validation, and case ascertainment 
Data validation is carried out at the point of data entry on the PICANet Web system and centrally 
on the database. Validation checks for logical inconsistencies, out of range values, missing and 
incorrect data are reported back to the individual participating organisations on demand via the 
web interface. PICANet Web also allows PICU staff to obtain reports on their own data to aid 
quality assurance, data validation checks and check case ascertainment. 
The Modulus 11 algorithm is used to validate the NHS number based on a check digit – this is a 
standard method of ensuring the NHS number is a true NHS number and improves our ability to 
trace patients through the PICANet database and in linked healthcare data. 
Validation reports are provided to participating organisations every 6 weeks and virtual validation 
visits are conducted by PICANet staff, aiming to have one visit every 12 – 18 months per 
participating organisation.  
The six-weekly validation reports alert participating organisations to timeliness of data entry, 
validation queries for resolution for core data collection and any customised data collection 
audits. Twice a year, they also involve checking case ascertainment - a cross check of admission 
records with those recorded on PICANet Web. 
Quarterly risk-adjusted Resetting Sequential Probability Ratio Test (RSPRT) plots are sent to 
each unit to address any immediate concerns if applicable and RSPRT guidance for units is 
available to support this process on the PICANet QI Resources webpage.  
The virtual validation visits allow for an in-depth review of case ascertainment, data quality and 
validation and are a core element of our data quality assurance. These visits are vitally important 
to maintain contact with PCC staff, pick up on systematic errors that may appear in the data and 
assist in managing user access and identifying team changes not already reported to PICANet.  
Case ascertainment is measured via units comparing the admission count in their admission 
book/electronic system over a two-month period and comparing these numbers to the number of 
admissions on PICANet Web database.  
  
Collaborative working supporting policy, 
commissioning, research and clinical trials 
PICANet has become established as the definitive source of data on paediatric intensive care 
activity in the UK and Ireland. The data have been used to plan PIC services, model demand, 
assess interventions and outcomes and provide data to underpin research to facilitate the 
development of new standards for critical care provision for children. PICANet has provided 
baseline data for the development of the IKID, SANDWICH and FEVER trials, all of which were 
funded and made use of the routinely collected PICANet data using the custom data download 
facility. This allows local control over the data. We also work closely with other funded studies, 
including DEPICT, FIRST-ABC, GIRFT, LAUNCHES-QI, NEURO-PACK, OCEANIC, Oxy-PICU, 
PERMIT, and PICnIC. PICANet have also supported the NHS response to the COVID-19 
pandemic by providing key data to inform the modelling of bed occupancy rates. 

 
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PICANet State of the Nation Report Appendices 2023 
Analytical techniques 
The Statistical Analysis Plan for the State of the Nation Report 2023 is available on the PICANet 
website. Statistical techniques used include simple cross tabulations, the calculation of crude and 
risk-adjusted standardised mortality ratios (SMRs) and 95% confidence intervals; the construction 
of crude and risk-adjusted funnel plots of SMRs; and local provision of risk-adjusted RSPRT plots 
to assess real-time performance related to in-PICU mortality. Risk-adjusted SMRs were 
calculated using the latest version of the Paediatric Index of Mortality (PIM3)1 recalibrated based 
on data within the current reporting period. 
Small number policy 
Publication of PICANet data is subject to scrutiny of small numbers. When small numbers of 
admissions are involved, other data items may become identifiable i.e. a living individual may be 
identified from the data. This can still be the case in aggregated data where small groups of 
individuals are presented. These are reviewed and categories are combined or cells anonymised 
where necessary. 
Outlier policy 
PICANet recalibrate the Paediatric Index of Mortality version 3 (PIM3) parameters for each year’s 
report and use these to calculate an SMR for each unit. When the SMR shows that risk-adjusted 
mortality within a unit is higher or lower than expected, the unit will be subject to the formal 
process outlined in PICANet’s Outlier policy (v3.0, 2023). The process within the policy allows 
PICANet and the unit to better understand the reason(s) behind their outlier status, and improves 
knowledge of good practice/areas for improvement which can be shared across providers. 
 
How we present our results 
Results are presented in tables and figures. This Report mainly focuses on children aged 0–15 
years apart from tables capturing the workload of the PICU (e.g. what treatments were used, how 
many bed days the PICU provided, etc.) unless otherwise stated. Where we present data on 0-15 
year olds or we present data by gender we exclude data relating to children who are recorded as 
having ‘ambiguous’ sex due to the increased risk of reidentification due to small numbers (i.e. to 
maintain statistical disclosure control).  
We report on five key metrics: case ascertainment including timeliness of data submission, 
retrieval mobilisation times, emergency readmissions within 48 hours of discharge, unplanned 
extubation in PICU and mortality in PICU. The infographic highlights the main findings of the 
report.    
Measures include the number of admissions, how many days patients are in PICU, the types of 
treatments patients receive and clinical outcomes such as death. We present data according to 
sex, age, ethnicity, deprivation, country of admission, treating PICU as well as country of 
residence and where the child is living.  
Data are presented in more granular detail in the “Tables and Figures” available on the Reports 
webpage. In general, data are presented for children aged 0–15 years and do not include any 
                                               
 
1 Straney, L., et al., Paediatric Index of Mortality 3: An Updated Model for Predicting Mortality in Pediatric Intensive Care. 
Pediatric Critical Care Medicine, 2013. 14(7): p. 673-681. 
 
 

 
10 
PICANet State of the Nation Report Appendices 2023 
admissions where the child’s age is unknown, however, some tables also include data relating to 
all patients admitted to PICU (including those who are 16 years and older or where we don’t know 
the patient’s age); this will be made clear for relevant tables.  
Rates 
We present certain information in the form of rates, enabling comparisons to be made between 
countries even though the population size in each country is different. Rates are usually 
presented as the number per 1,000 or per 100,000 of the relevant population. 
When we want to compare two rates we divide one rate by the other, to get a relative rate. For 
example, to compare the admission rate in Scotland to that in England we would divide the 
Scottish admission rate by the English admission rate. If the two rates were the same then the 
relative rate would be one. If the Scottish rate was higher than the English rate then the relative 
rate would be greater than one. If the Scottish rate was lower than the English rate then the 
relative rate would be less than one. This measure allows us to talk about the Scottish rate in 
comparison (or relative) to the English rate. 
Deaths 
We measure how poorly children were at the point when they were admitted to PICU usingPIM32. 
This takes into account many factors (such as whether the child was admitted as an emergency 
and whether they needed help breathing) to estimate how likely each child is of dying. 
When comparing deaths in PICU, we calculate the risk-adjusted standardised mortality ratio 
(SMR). This compares the number of deaths that have happened in a PICU and how many 
deaths we expected to happen given how poorly children were when they were admitted to PICU. 
We also use ‘funnel plots’ to compare individual PICUs in terms of mortality which enables us to 
display and compare the risk-adjusted SMR on the same graph. These plots tell us what range of 
values we might expect to see for the SMR in each PICU, given that we expect a certain amount 
of variation as these calculations are based on a very small number of deaths. This is the process 
used to identify outliers as described in the Outlier Policy section.  
 
Important notes 
PICANet database outage 
In March 2022 the University of Leeds proactively dealt with a cyber-security issue and as a 
precaution there was a period of outage for the PICANet Web database. On 06 June 2022 the 
system became available to all participating organisations for manual data entry and validation 
and on 20 July 2022 the importing of data could resume. The outage affected both PICANet and 
the units, and so additional time was allowed in 2022 for units to ensure their 2021 data were up 
to date for the State of the Nation Report 2022. The outage had a substantial impact on the timely 
submission of the 2022 data (presented in Metric 1 of the State of the Nation Report 2023) and 
this is reflected in a lower than usual average case ascertainment and three month timeliness of 
data entry value of 75.8%3 in 2022, compared to 87.7% in 2021. 
                                               
 
2 Straney, L., et al., Paediatric Index of Mortality 3: An Updated Model for Predicting Mortality in Pediatric Intensive Care. 
Pediatric Critical Care Medicine, 2013. 14(7): p. 673-681. 
3 This is the three month timeliness value and therefore does not correspond to Metric 1 in the Summary Report. 

 
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PICANet State of the Nation Report Appendices 2023 
Compared with previous years, there was a noticeable reduction in the number of data access 
requests fulfilled in 2022 as a result of the database outage.  
Data collection issues 
The PICUs in the Republic of Ireland, Children’s Health Ireland at Crumlin (ZC) and at Temple 
Street (ZD), had low levels of timely data completion and submission in 2021 due to the Health 
Service Executive (HSE) experiencing a major ransomware cyberattack on 14 May 2021. This 
caused all IT systems nationwide to be shut down and Children’s Health Ireland were heavily 
impacted by the cyberattack.  
The Freeman Hospital PICU (K2) experienced local IT issues from April 2022 which hindered 
their usual data submission and validation routine and contributed to low levels of timely data 
completion. To ensure that data for admissions in 2022 were included in the 2023 State of the 
Nation Report, the method of data entry was changed to ensure that the backlog of data were 
entered and validated. 
Case ascertainment 
The Portland Hospital (ZF) were identified as having low case ascertainment for admissions to 
PICU during 2021 due to a resourcing issue at the unit. Following identification of the issue, 
efforts were made to ensure that backlog of data entry was undertaken during Summer 2022. As 
such, the unit is included in the State of the Nation Reports covering this period.    
COVID-19 data collection 
UK units ceased the rapid reporting of the number of new admissions with SARS-CoV-2 and 
clinically diagnosed PIMS-TS to PICANet in June 2023. PICUs continue to complete the COVID-
19 II custom audit data collection where appropriate. We are grateful to the PICU teams for the 
work put into the rapid reporting and for their continuation with the customised data collection. 
Closure of ZE – Harley Street PICU 
One non-NHS PICU (ZE) closed to paediatric admissions permanently in March 2020. Data 
presented for this unit does not cover the full reporting period and as such data from this unit is 
not included in key metrics. ZE will no longer be included in the State of the Nation report from 
2024 onwards.   
Redesignation of S – James Cook University Hospital 
(Middlesbrough) 
One NHS PICU (S) was redesignated from a Level 3 paediatric intensive care unit to a Level 2 
unit in 2019 and as such data from this unit is not included in key metrics from this report 
onwards.  
Addition of T032 – PaNDR  
The Paediatric and Neonatal Decision Support and Retrieval Service (PaNDR) provides critical 
care transports for children in the East of England. They have submitted data for paediatric 
critical care transports carried out from April 2021. 

 
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PICANet State of the Nation Report Appendices 2023 
Changes to the units in Leicester  
The cardiac paediatric intensive care unit (CPICU) in Leicester (X3) formerly known as the PICU 
based at Glenfield Hospital (X1) was moved across sites to the Children’s Hospital based at 
Leicester Royal Infirmary on 08 August 2021. This unit is shown in the tables and figures as 
X3X1.  
Changes to the tables and figures 
We are currently reviewing the way we capture and present data for our report, including 
undertaking a review of the way that we capture Referrals data. As such the following tables are 
not included this year:  
 
R1 Number of Referrals for Transport by Transport Organisation & Outcome  
 
Table 4.15 Number of Individual Children by Health Organisation and Diagnostic Group of 
First Admission  
 
Table 2.1 Retrievals / Transfers by Team Type and Age 
 
Table 2.2 Specialist Team Retrievals / Transfers by Diagnostic Group and Age 
 
Table 2.3 Non-Specialist Team Retrievals / Transfers by Diagnostic Group and Age 
 
Table 2.4 Admissions by Organisation and Transport Team Type for Retrievals and 
Transfers 
 
R1 Number of Referrals for Transport by Transport Organisation and Outcome 
 
R1a Number of Referrals for Transport by PIC Transport Organisation and Outcome 
 
R2 Number of Referrals for PICU Admission by Healthcare Organisation & Outcome 
 
This year we have included a number of new sensitivity analyses related to the Outlier Policy as 
well as a small expansion of the activity data section. As such the following tables have been 
added to this report:  
 
Table 4.13 Single Year Standardised Mortality Ratios by Health Organisation (0-15 
years), 2022 
 
Table 4.15 Three-year Standardised Mortality Ratios by Health Organisation (0-15 years, 
intensive care level admissions) 
 
Table 4.16 Three-year Standardised Mortality Ratios by Health Organisation (0-15 years, 
excluding palliative care discharge) 
 
Table 4.17 Three-year Standardised Mortality Ratios by Health Organisation (0-15 years, 
invasively ventilated) 
 
Table 6.4 Highest Level of Care During Admission by Health Organisation 
 
 
 

 
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PICANet State of the Nation Report Appendices 2023 
 Links with the clinical community 
PICANet is overseen and guided by the PICANet Steering Group. The Steering Group oversees 
the wider governance of the project, providing advice and guidance on policy and operation to 
ensure that PICANet provides a sound evidence-base for audit, service evaluation and research 
in paediatric critical care. The Steering Group has representatives from a broad range of 
organisations across the UK and Republic of Ireland with an interest in PCC and includes 
parent/carer representation, the Paediatric Critical Care Society, and the Royal Colleges of 
Paediatrics and Child Health, Anaesthetists and Nursing. 
PICANet has a dedicated Clinical Advisory Group (CAG), whose members represent the 
paediatric critical care teams that submit data to PICANet. The CAG has the following functions: 
to provide practical clinical advice to the PICANet team; to act as a forum in which PCC staff can 
raise practical operational issues about data entry and transmission and validation; to contribute 
to discussions about the long-term strategic development of PICANet; to identify important audit 
and research questions that the PICANet database could address; and to review the results and 
interpretation of analyses from a clinical perspective. It also acts as the natural forum for the co-
ordination of multi-centre clinical research studies and reviews requests for access to PICANet 
data to ensure feasibility, prevent duplication of activity and to encourage collaboration. 
PICANet has the support of the Paediatric Critical Care Society and the associated PCCS Study 
Group and the Clinical Reference Group which oversees Paediatric Critical Care, including PCC 
transport. 
 
Patient and Public Involvement 
Patient and Public Involvement (PPI) refers to the inclusion of patients, parents, carers, children 
and young people, and members of the public in the activities and development of PICANet’s 
outputs. 
In 2022 PICANet produced a detailed long term plan to reinvigorate this important area to ensure 
that PPI is embedded into the development of new projects and extensions of the remit of 
PICANet and outputs (e.g., public-facing reports and infographics) and to ensure that this work 
will enhance and support the experience of children being cared for in PCC and their families. 
The initial plans were to revisit, in a series of workshop sessions held in 2023 with parents/ carers 
and children and young people, the fundamental working arrangements of PICANet to ensure 
these remained appropriate. These include the role of PICANet and how data are collected; the 
exemption from the National Data Opt-Out (England) for the clinical audit and the application of it 
to research if we need to process identifiable data; how we anonymise data and audit/research 
that uses PICANet data (the use of confidential patient information without consent).  
To date, all communication that we have had with parents, carers, children and young people has 
been very positive, supporting PICANet and its work and has guided PICANet’s provision of 
information. We have ongoing plans to continue to develop and expand our PPI work further in 
the upcoming years. 

 
14 
PICANet State of the Nation Report Appendices 2023 
Participating Organisation & Unit Characteristics 2022 
NHS Trust / Organisation 
Participating Hospital 
Unit / 
Ward1 
Number of 
IC beds 
Number of 
HD beds 
Type of unit 
Barts Health NHS Trust 
The Royal London Hospital 
PCCU 
6 
2 
General  
Birmingham Women’s and Children’s 
Hospital NHS Foundation Trust 
Birmingham Children’s Hospital 
PICU 
29 
0 
General including cardiac, liver, 
neurosurgical, ECLS, ENT, 
oncology, metabolic and spinal 
Cambridge University Hospitals NHS 
Foundation Trust 
Addenbrooke's Hospital 
PICU 
8 
5 
General  
Cardiff & Vale University Health Board 
Noah’s Ark Children’s Hospital for 
Wales 
PCCU 
7 
4 
General  
Manchester University NHS Foundation 
Trust 
Royal Manchester Children’s Hospital 
PICU 
17 
14 
General  
Great Ormond Street Hospital for 
Children NHS Trust 
Great Ormond Street Hospital for 
Children 
CICU 
20 
0 
Cardiac 
PICU  
17 
0 
General 
NICU 
10 
0 
Neonatal 
Guy’s & St. Thomas’ NHS Foundation 
Trust 
Evelina London Children’s Hospital 
PICU 
21 
0 
General & Cardiac 
HSE (Health Service Executive) 
Children’s Health Ireland at Temple 
Street, Dublin 
PICU 
9 
0 
General 
Children’s Health Ireland at Crumlin, 
Dublin 
PICU 
20 
3 
General & Cardiac 
King’s College Hospital NHS 
Foundation Trust 
King’s College Hospital  
PICU 
8 
8 
General, Hepatic & Neurosurgical 
The Leeds Teaching Hospitals NHS 
Trust 
Leeds Children's Hospital 
PICU 
16 
0 
General & Cardiac 
Newcastle upon Tyne Hospitals NHS 
Foundation Trust 
Great North Children’s Hospital 
PICU 
11 
0 
General & Surgical ICU 
Freeman Hospital 
CICU 
12 
0 
Cardiothoracic surgery, heart 
failure, ECMO & ENT 
NHS Lothian 
Royal Hospital for Children and Young 
People, Edinburgh (formerly Royal 
Hospital for Sick Children) 
PICU 
10 
9 
General, Neurosurgical & Spinal 
NHS Greater Glasgow and Clyde 
Royal Hospital for Children, Glasgow  
PICU 
22 
0 
General, Neurosurgical Cardiac & 
ECMO 

 
15 
PICANet State of the Nation Report Appendices 2023 
NHS Trust / Organisation 
Participating Hospital 
Unit / 
Ward1 
Number of 
IC beds 
Number of 
HD beds 
Type of unit 
Oxford University Hospitals NHS 
Foundation Trust 
John Radcliffe Hospital 
PCCU 
8 
9 
General including neurosurgical, 
craniofacial and major trauma 
Nottingham University Hospitals NHS 
Trust 
Nottingham Children’s Hospital 
PICU 
82 
6 
General (plus regional oncology, 
major trauma, ENT, paediatric 
surgery, regional neurosurgical, 
spinal, supraregional renal service 
and cleft lip & palate services) 
Royal Brompton & Harefield NHS 
Foundation Trust 
Royal Brompton Hospital 
PICU 
16 
4 
Cardiac & Respiratory 
Alder Hey Children’s NHS Foundation 
Trust 
Alder Hey Children’s Hospital 
PICU 
24 
0 
General & Cardiac 
Sheffield Children’s NHS Foundation 
Trust  
Sheffield Children’s Hospital 
PCCU 
7 
8 
General (plus major trauma, 
neurosurgery, ENT, oncology, 
metabolic, paediatric surgery, 
spinal) 
University Hospitals Southampton NHS 
Foundation Trust 
Southampton Children’s Hospital 
PICU 
14 
0 
General, Cardiac & Neurosurgery 
South Tees Hospitals NHS Foundation 
Trust 
James Cook University Hospital 
PCCU 
0 
63 
General 
St. George’s University Hospitals NHS 
Foundation Trust 
St. George’s Hospital 
PICU 
6 
6 
General, Neurosurgical, Oncology & 
Paediatric Surgery 
Imperial College Healthcare NHS Trust 
St. Mary’s Hospital 
PICU 
11 
4 
General 
Belfast Health and Social Care Trust 
Royal Belfast Hospital for Sick 
Children 
PICU 
124 
0 
General 
University Hospitals Bristol NHS 
Foundation Trust 
Bristol Royal Hospital for Children 
PICU 
18 
0 
General, Cardiac, Neurosurgery, 
Burns and Major Trauma 
University Hospitals of Leicester NHS 
Trust 
Leicester Royal Infirmary CICU 
CICU 
62 
0 
General (Children’s Intensive Care 
Unit) 
Leicester Royal Infirmary CPICU 
(previously Glenfield Hospital) 
CPICU 
7 
0 
Cardiac & ECMO 
University Hospitals of North Midlands 
NHS Trust 
Royal Stoke University Hospital 
PICU 
6 
1 
General 
HCA Healthcare UK (non-NHS) 
The Portland Hospital 
PICU 
9 
9 
General 
This table is updated with information gathered during the virtual validation meetings.  
1. 
Cardiac Intensive Care Unit (CICU), Cardiac Paediatric Intensive Care Unit (CPICU) Neonatal Intensive Care Unit (NICU), Paediatric Critical Care Unit (PCCU), Paediatric 
Intensive Care Unit (PICU), Extracorporeal Membrane Oxygenation (ECMO), Ear nose and throat (ENT), Extracorporeal Life Support (ECLS) 
2. 
IC/ HD beds are used flexibly if required. 
3. 
The James Cook University Hospital, Middlesbrough were redesignated as a Level 2 unit in 2019. 

 
16 
PICANet State of the Nation Report Appendices 2023 
4. 
PICU Royal Belfast Hospital for Sick Children routinely admit children up to 14 years of age. 
 
For a list of all participating organisations including transport services please see our website. A list of included units and SPTS contributing data for this reporting period is 
published in the front of the report Tables and Figures 2023.

 
17 
PICANet State of the Nation Report Appendices 2023 
Clinical Advisory Group Membership 2020 - 2022 
Name 
Position 
NHS Trust / Hospital 
Period served 
Dr Peter Davis (Chair to 
2020) 
Consultant in Paediatric Intensive Care 
University Hospitals Bristol NHS Foundation Trust 
Bristol Royal Hospital for Children 
2006 - Ongoing  
Simon Chiles 
Advanced Nurse Practitioner 
University Hospitals of Leicester NHS Trust 
Glenfield Hospital 
2014 - Ongoing  
Dr Mark Terris 
(representing Northern 
Ireland) 
Consultant Anaesthetist 
Belfast Health and Social Care Trust 
Royal Belfast Hospital for Sick Children 
2014 - Ongoing 
Judith Gray  
(representing Nursing) 
Sister 
Newcastle upon Tyne Hospitals NHS Foundation Trust 
Newcastle Freeman Hospital 
2015 - Ongoing 
Dr Hari Krishnan 
Consultant Paediatric Intensivist 
Birmingham Women’s and Children’s NHS Foundation Trust 
Birmingham Children’s Hospital 
2018 - Ongoing 
Prof Mark Peters (Chair from 
2020) 
Clinical Unit Chair 
Great Ormond Street Hospital for Children NHS Trust 
Great Ormond Street Hospital for Children 
2018 - Ongoing 
Dr Andrew Nyman 
Consultant in Paediatric Intensive care 
Guy’s and St Thomas’ Foundation Trust 
Evelina Children’s Hospital, South Thames Retrieval service 
(STRS) 
2019 - Ongoing 
Dr Sara Ali (representing 
Wales) 
Consultant in Paediatric Intensive Care 
Cardiff University Hospital, Noah's Ark Children's Hospital of 
Wales 
2020 – Ongoing  
Dr Catherine McDougall 
(representing Scotland) 
Consultant in Paediatric Intensive Care 
Royal Hospital for Children and Young People, Edinburgh 
2021 - Ongoing 
Rachel Neal 
PICU Data & Audit Manager 
St George’s Hospitals NHS Foundation Trust 
2021 - Ongoing 
Dr Padmanabhan 
Ramnarayan (representing 
PCCS SG) 
Reader in Paediatric Intensive Care & 
Honorary Consultant 
Imperial College London & Imperial College Healthcare NHS 
Trust 
2022 - Ongoing 
Annette Shaw 
Data and Quality Nurse 
Royal Hospital for Children, Glasgow 
2021 - Ongoing 
Dr Dora Wood (representing 
Transport Organisations) 
Consultant in Paediatric Intensive Care 
Bristol Paediatric Intensive Care Unit and WATCh 
2021 - Ongoing 
Dr Martina Healy 
(representing ROI) 
Clinical Lead for Irish Paediatric Critical Care 
Audit 
Children’s Health Ireland at Crumlin 
2022 - Ongoing 
Katie Higgins 
Clinical Nurse Specialist 
North West and North Wales Paediatric Transport Service 
(NWTS) 
2022 - Ongoing 
Kathryn Claydon-Smith  
Clinical Nurse Specialist 
North West and North Wales Paediatric Transport Service 
(NWTS) 
2009 - 2022 

 
18 
PICANet State of the Nation Report Appendices 2023 
Name 
Position 
NHS Trust / Hospital 
Period served 
Dr Padmanabhan 
Ramnarayan (representing 
Transport Organisations) 
Consultant 
Great Ormond Street Hospital NHS Trust  
Children's Acute Transport Service 
2012 - 2021 
Lesley Molony 
Information Officer 
Southampton Universities Hospital NHS Trust 
Southampton Children’s Hospital 
2013 - 2021  
Dr Rachel Agbeko 
Paediatric Intensivist 
Newcastle upon Tyne Hospitals NHS Foundation Trust  
Great North Children’s Hospital 
2012 - 2020 
Dr John Alexander 
Consultant in Paediatric Intensive Care 
University Hospitals of North Midlands NHS Trust  
Royal Stoke University Hospital 
2012 - 2020 
Dr John Pappachan 
Anaesthetics and Paediatric Intensive Care 
Medicine   
University Hospitals Southampton NHS Foundation Trust 
Southampton Children’s Hospital 
2012 - 2020 
Dr Alistair Turner  
(representing Scotland) 
Consultant in Paediatric Intensive Care 
NHS Greater Glasgow and Clyde 
Royal Hospital for Children, Glasgow 
2016 - 2020 
Dr Roddy O’Donnell 
Consultant in Paediatric Intensive Care 
Cambridge University Hospitals NHS Foundation Trust 
Addenbrooke’s Hospital 
2002 - 2020 
Dr Shane Tibby 
Consultant in Paediatric Intensive care 
Guy’s and St Thomas’ Foundation Trust 
Evelina Children’s Hospital 
2011 - 2019 
Dr Peter Wilson 
PICU Consultant 
University Hospitals Southampton NHS Foundation Trust 
Southampton Children’s Hospital 
2011 - 2019 
 
Ongoing as of 31st December 2022.  

 
19 
PICANet State of the Nation Report Appendices 2023 
Steering Group Membership 2020 - 2022 
Name  
Position  
Organisation  
Representation  
Period Served  
Dr Michael Marsh 
(Chair)  
Regional Medical Director & 
CCIO Higher Level Responsible 
Officer South West Region  
NHS England & NHS Improvement  
Royal College of Paediatrics and 
Child Health  
National Commissioner for 
Paediatric Intensive Care Clinical 
Reference Group  
2002 - Ongoing  
Dr Peter Davis  
Consultant in Paediatric Intensive 
Care  
University Hospitals Bristol NHS Foundation 
Trust  
Bristol Royal Hospital for Children  
Chair of Paediatric Intensive Care 
Clinical Reference Group  
2011 - Ongoing  
Lucy Wheeler  
Parent  
N/A  
Parents and Carers 
Representation  
2011 - Ongoing  
Dr Mark Terris  
Consultant Anaesthetist  
Belfast Health and Social Care Trust  
Royal Belfast Hospital for Sick Children  
Northern Ireland  
2012 - Ongoing  
Andrew Fleming  
National Clinical Audit Manager  Intensive Care National Audit & Research 
Centre (ICNARC)  
Intensive Care National Audit & 
Research Centre (ICNARC)  
2017 - Ongoing  
James Fraser  
Consultant Paediatrician  
University Hospitals Bristol NHS Foundation 
Trust  
Bristol Royal Hospital for Children  
Paediatric Intensive Care Society 
President (2019 - )  
2019 - Ongoing  
Dr Mark Peters 
Consultant in Paediatric Intensive 
Care 
Great Ormond Street Hospital, London 
Chair of PICANet Clinical Advisory 
Group  
2020 - Ongoing  
James Campbell 
Associate Director of Quality and 
Development 
Health Quality Improvement Partnership 
(HQIP) 
Commissioning body for PICANet 
in England 
2021 - Ongoing 
Donna Webb 
Matron for Critical Care and 
Cardiology 
Leeds Children’s Hospital 
PCCS Nurse Managers Group 
2021 - Ongoing 
Padmanabhan 
Ramnarayan 
Reader in Paediatric Critical Care Imperial College London 
Chair of PCCS Study Group 
2022 - Ongoing 
Karina Hamilton 
Paediatric Programme Assistant 
Audit Manager 
National Office of Clinical Audit 
Republic of Ireland 
2022 - Ongoing 

 
20 
PICANet State of the Nation Report Appendices 2023 
Name  
Position  
Organisation  
Representation  
Period Served  
Natalia Plejic 
HQIP PICANet Project Manager Health Quality Improvement Partnership 
(HQIP) 
Commissioning body for PICANet 
in England 
2022 - Ongoing 
Roseanne McDonald Programme Associate Director: 
Nursing and Quality Adviser 
National Services Division (NSD), NHS 
National Services Scotland 
Scotland 
2022 - Ongoing 
Freddie Drew 
National Programme of Care 
Manager – Women & Children 
NHS England 
NHS England 
2022 - Ongoing 
Vivien Dunne 
HQIP PICANet Project Manager  Healthcare Quality Improvement Partnership 
(HQIP)  
Commissioning and funding body 
(England)  
2022 - 2022 
Daniel Eve 
National Programme of Care 
Manager, Specialised 
Commissioning 
NHS England and NHS Improvement 
National Commissioner for 
Paediatric Intensive Care Clinical 
Reference Group 
2021 - 2022 
Sam Harper  
HQIP PICANet Project Manager  Healthcare Quality Improvement Partnership 
(HQIP)  
Commissioning and funding body 
(England)  
2018 - 2022  
Sasha Hewitt  
Associate Director for Quality and 
Development and Data 
Protection Officer  
Healthcare Quality Improvement Partnership 
(HQIP)  
Commissioning and funding body 
(England)  
2017 - 2021  
Louise Dewsbury  
Senior Nurse  
Guy’s and St Thomas’ NHS Foundation 
Trust  
Evelina London Children’s Hospital  
PICS Nurse Managers Group  
2017 - 2021  
Rachel Lundy  
Senior Commissioning Manager  NHS England & NHS Improvement  
National Commissioner for 
Paediatric Intensive Care Clinical 
Reference Group  
2016 - 2021  
Dr Jillian McFadzean  Clinical Lead  
NHS Lothian, Royal Hospital for Children and 
Young People, Edinburgh  
Scotland  
2005 - 2021  
Dr Gale Pearson  
Consultant in Paediatric Intensive 
care  
Birmingham Women’s and Children’s NHS 
Foundation Trust  
Birmingham Children’s Hospital  
Chair of Paediatric Intensive Care 
Clinical Reference Group  
2015 - 2021  
Dr Barney 
Scholefield  
Consultant Intensivist  
Birmingham Childrens Hospital  
Chair of Paediatric Intensive Care 
Study Group  
2016 - 2021  
Ongoing as of 31st December 2022.

 
21 
PICANet State of the Nation Report Appendices 2023 
Data Collection Form in use 2022 – 
Admission     

 
22 
PICANet State of the Nation Report Appendices 2023 
  
 

 
23 
PICANet State of the Nation Report Appendices 2023 
 
 

 
24 
PICANet State of the Nation Report Appendices 2023 
 

 
25 
PICANet State of the Nation Report Appendices 2023 
Data Collection Form in use 2022 – Referral 
 

 
26 
PICANet State of the Nation Report Appendices 2023 
Data Collection Form in use 2022 – Transport 
 

 
27 
PICANet State of the Nation Report Appendices 2023 
  
 

 
28 
PICANet State of the Nation Report Appendices 2023 
PICANet Information Leaflets for Families and Carers 2022  
The leaflet below (v7.0 Jul 2022) was in place at the last date of the reporting period (31 December 2022) for those in England. 
 
 
 

 
29 
PICANet State of the Nation Report Appendices 2023 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
30 
PICANet State of the Nation Report Appendices 2023 
The leaflet below (v6.4 Apr 2021) was in place at the last date of the reporting period (31 December 2022) for those in Wales, Scotland and Northern Ireland. 
 
 

 
31 
PICANet State of the Nation Report Appendices 2023 
 

 
32 
PICANet State of the Nation Report Appendices 2023 
PICANet Information Leaflet for Children 2022  
The leaflet below (v7.0 Jul 2022) was in place at the last date of the reporting period (31 December 2022) for those in England. 
 
 
 

 
33 
PICANet State of the Nation Report Appendices 2023 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
34 
PICANet State of the Nation Report Appendices 2023 
The leaflet below (v6.4 Apr 2021) was in place at the last date of the reporting period (31 December 2022) for those in Wales, Scotland and Northern Ireland. 
 

 
35 
PICANet State of the Nation Report Appendices 2023 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
The Families and Carers and Children’s information leaflets were/are also available in Welsh and for patients and families in the Republic of Ireland. The leaflets above are those in place at the 
latest date of the reporting period – 31st December 2021. 

 
 
36 
PICANet State of the Nation Report Appendices 2023 
PICANet Privacy and Fair Processing 
Statement  
The Statement below (v5.0 29 Jul 2022) was in place at the latest date of the reporting period – 31 
December 2022. 
 
PICANet Patient Privacy Notice and Fair Processing Statement 
Paediatric Intensive Care Audit Network (PICANet) is an international database of paediatric 
intensive care in the United Kingdom and Republic of Ireland run by the University of Leeds 
and the University of Leicester.  
This statement explains how we use any personal information we collect about you (child / 
young person) or the child you care for. 
Contents 
What data are being collected? ............................................................................................... 36 
What are the data being used for? ........................................................................................... 36 
Our legal basis for processing the data ..................................................................................... 37 
Where are the data held and for how long? ............................................................................... 38 
Sharing data with other organisations....................................................................................... 38 
How to request that your/your child’s personally identifiable information are removed from the 
PICANet database ................................................................................................................. 38 
Does the National Data Opt-Out in England apply to PICANet? ................................................... 39 
How to opt out of the PICANet research database ..................................................................... 39 
Who is responsible for the data?.............................................................................................. 40 
What if I have concerns about the way the personal data are processed? .................................... 40 
 
What data are being collected? 
PICANet collects data on every child and young person referred or admitted to a Paediatric 
Intensive Care Unit (PICU) in the UK and the Republic of Ireland. The data are sent to us 
over a very secure web application by each PICU or specialist transport team on a regular 
basis.  Data are collected for each individual for the whole period of their PICU stay and also 
about what happened to them if they had a critical care transport (this means that a 
specialist team of nurses and doctors travelled in an ambulance to pick them up and take 
them to a PICU).  
What are the data being used for? 
We collect this data for clinical audit, research, and service evaluation and planning to 
improve the care given to children and young people admitted to PICU.  Each year we 
produce a report on activity and outcomes for paediatric intensive care in the UK and 
Ireland. No personal or identifiable information will ever be made public in any report or 
publication. 

 
 
37 
PICANet State of the Nation Report Appendices 2023 
The PICANet research database supports high quality research in the areas of paediatric 
intensive care, specific conditions affecting children and young people accessing paediatric 
intensive care services, epidemiology of critical illness, and public health. Following a 
rigorous data request process, and providing the appropriate research ethics approvals and 
legal bases for data processing and sharing are in place, baseline data can be provided for 
research studies and clinical trials to extend the available knowledge with a view to 
ultimately providing benefits to patients. 
Our legal basis for processing the data 
PICANet has permission to collect personal data including identifiers and special category 
data of children and young people admitted to or referred for Paediatric Intensive Care 
without taking explicit (written) consent from the children or their carers. The personal 
identifiers include name, address, date of birth, and health record identifier number (e.g. 
NHS number)*. Special category data include ethnicity and data concerning health.  
* We do not receive name, address or health record identifier number for data from Northern 
Ireland or the Republic of Ireland.  
 
Throughout the UK, the disclosure of confidential information is lawful under the Common 
Law Duty of Confidentiality. This is because the work of ensuring high standards of quality 
and safety of healthcare is in the public interest. Our lawful basis for processing personal 
data is Public Task as set out in Article 6 of the General Data Protection Regulation (GDPR):  
- 
Article 6 (1) (e) processing is necessary for the performance of a task carried out in 
the public interest or in the exercise of official authority vested in the controller. 
 
The Data Protection Act 2018 legal basis is, Schedule 1(1)(3) ‘public health’ underpinned by 
Health and Social Care Act 2021 Part 1 section 2. 
PICANet has the following support to process confidential patient information without 
consent for both non-research and research purposes under Regulation 5 of the Health 
Service (Control of Patient Information) Regulations 2002 (’section 251 support’ of the NHS 
Act 2006) for data collected in England and Wales: 
- 
The clinical audit activity falls within the management of health and social care 
services in the public interest. Therefore, the Health Research Authority and The 
Secretary of State for Health and Social Care, on advice from the Confidentiality 
Advisory Group, an advisory body which provides independent expert advice on the 
use of confidential patient information without consent in England and Wales, has 
provided support for PICANet to process confidential patient information without 
consent for non-research purposes.  
 
- 
The medical research database is approved by a research ethics committee and 
contributes to medical research in the public interest. Therefore, the Health Research 
Authority, on advice from the Confidentiality Advisory Group, has provided support 
regarding research purposes. 
Summaries of the approved non-research and research applications for PICANet are 
available on the register of approvals on the HRA website. The references are: 
21/CAG/0090 (non-research) and 21/CAG/0098 (research).  
 
For the participating organisations in Scotland, local and Caldicott approvals are in place and 
PICANet await approval from the NHS Scotland Public Benefit and Privacy Panel for Health 
and Social Care (NHS HSC-PBPP).  
 

 
 
38 
PICANet State of the Nation Report Appendices 2023 
A Data Access Agreement for personal identifiable data is in place between PICANet and 
Belfast Health and Social Care Trust for data from organisations in Northern Ireland.  
 
Participating organisations in the Republic of Ireland send data PICANet without identifiers 
which does not require legal basis under the Common Law Duty of Confidentiality. 
 
The legal basis set out in GDPR for processing special categories of personal data is: 
- 
Article 9 (2) (i) processing is necessary for reasons of public interest in the area of 
public health, such as protecting against serious cross-border threats to health or 
ensuring high standards of quality and safety of health care and of medicinal 
products or medical devices, on the basis of Union or Member State law which 
provides for suitable and specific measures to safeguard the rights and freedoms of 
the data subject, in particular professional secrecy.  
 
For the research database, the legal basis set out in GDPR is: 
- 
Article 9 (2) (j) processing is necessary for archiving purposes in the public interest, 
scientific or historical research purposes or statistical purposes in accordance with 
Article 89(1) based on Union or Member State law which shall be proportionate to the 
aim pursued, respect the essence of the right to data protection and provide for 
suitable and specific measures to safeguard the fundamental rights and the interests 
of the data subject. 
 
Where are the data held and for how long? 
All of the data is held at the University of Leeds in a highly secure environment.  As we are 
an audit, we keep this data permanently so we can check on what has happened in the past.  
We do remove personal identifiers from our data base once an individual is older than 18 
years and has not been in PICU for the last five years. 
Sharing data with other organisations 
PICANet may share data held on its database with researchers, other audits, or other 
healthcare providers in order to help improve patient care.  We will NOT share personal 
identifiers (such as name, address, date of birth or NHS number) with anyone else unless 
the appropriate legal, ethical, and security arrangements are in place to keep your personal 
details safe and secure. Very occasionally, personal data may be processed by an 
authorised third party such as NHS Digital, but again, only with the necessary regulatory 
permissions.  They have very high levels of security and will keep these data very safe. 
We have a rigorous process of assessing the merit of requests for data and information and 
publish details of these requests each year in our Annual Report.  Data collected in English 
NHS paediatric intensive care units and specialist transport teams are controlled by the 
Healthcare Quality Improvement Partnership (HQIP) and all requests go through their Data 
Access Request Group.  More details about the HQIP data request process can be found at: 
https://www.hqip.org.uk/national-programmes/accessing-ncapop-data/.  
 
How to request that your/your child’s personally identifiable information are removed 
from the PICANet database 
If you do not want information which could identify you or your child included in PICANet, 
please tell the nurse or doctor caring for your child. They will make sure your child’s personally 
identifiable information are removed before being sent to PICANet.  
Any decision will not alter the care your child receives in this or any other hospital. 

 
 
39 
PICANet State of the Nation Report Appendices 2023 
If you have left hospital and decide that you do not want information which could identify 
you/your child included in PICANet, please call us directly at PICANet on xx-xxxx-xxxx or 
email xxx@xxx.xx.  
PICANet will remove the identifiable information within 25 working days of your request and 
let you know once this has been done.  
Please note that your anonymised information will remain in the PICANet database for audit 
(non-research) and approved research purposes. 
You do have the right to request access to and to request to rectify information held about 
you or the child you care for. 
 
Does the National Data Opt-Out in England apply to PICANet? 
Clinical audit data 
The National Data Opt Out is not applied to PICANet clinical audit data received from 
English paediatric critical care services. PICANet have received permission from the Heath 
Research Authority Confidentiality Advisory Group for England and Wales not to apply the 
National Data Opt-Out. This application was made as an amendment to our existing 
approval 21/CAG/0090. Permission was granted because the absence of even one child’s 
data can lead to inaccurate conclusions.  
Research data 
PICANet applies the National Data Opt-Out to the research database for data received from 
English hospitals. This means that, where a National Data Opt-Out has been set/ applied, 
data will not be included in any approved research projects. 
 
Please note that Data collected from Level 2 Paediatric Critical Care units are not included in 
research and therefore this and the following section do not apply. 
 
How to opt out of the PICANet research database 
If you have not set a National Data Opt-Out and you are considering opting out of the PICANet 
research dataset please see the PICANet clinical audit and research database opt out policy 
available on our website (www.picanet.org.uk/) for full details. 
 
You are free to withdraw your/your child’s data from the research database at any time. Any 
decision will not alter the care your child receives in this or any other hospital. 
 
 
 
 
 
 
 
 
 

 
 
40 
PICANet State of the Nation Report Appendices 2023 
Who is responsible for the data? 
NHS England is joint Data Controller with Healthcare Quality Improvement Partnership for 
data collected in English NHS PICUs and transport teams. 
 
Healthcare Quality Improvement 
Partnership 
Healthcare Quality Improvement 
Partnership Ltd. 
27A Harley Place 
London W1G 8LZ  
(Charity Reg No. 1127049) 
 
Data Protection Officer: Sasha Hewitt (E: 
xxx@xxx.xx) 
Data controller registration number 
provided by the Information 
Commissioner’s Office: Z1780946  
 
The NHS Commissioning Board (NHS 
England) 
NHS England London 
Skipton House 
80 London Road 
London 
SE1 6LH 
 
Data Protection Officer: Carol Mitchell (E: 
xxx@xxx.xx) 
Data controller registration number 
provided by the Information 
Commissioner’s Office: Z2950066  
 
The University of Leeds and the University of Leicester are joint data processors for the data 
collected in English NHS PICUs and transport teams. 
 
The joint Data Controllers and Data Processors for data collected in all private PICUs and 
PICUs and transport teams in Scotland, Wales, Northern Ireland and the Republic of Ireland 
are: 
 
University of Leeds 
Leeds 
University of Leicester 
University Road  
LS2 9JT 
Data Protection Officer: Alice Temple 
T: xx-xxxx-xxxx 
E: xxx@xxx.xx 
 
Data controller registration number 
provided by the Information 
Commissioner’s Office: Z553814X 
Leicester, LE1 7RH 
Data Protection Officer: Parmjit Gill 
T: xx-xxxx-xxxx 
E: xxx@xxx.xx 
 
Data controller registration number 
provided by the Information 
Commissioner’s Office: Z6551415 
 
What if I have concerns about the way the personal data are processed? 
If you wish to raise a complaint about how we have handled your or your child’s personal 
data, please contact the Data Protection Officers (above) who will investigate the matter. If 
you are not satisfied with our response or believe we are processing the data in a way that is 
not lawful you can complain to the Information Commissioner’s Office (ICO). 
https://ico.org.uk/ 
 
 
 
 

 
41 
PICANet State of the Nation Report Appendices 2023 
Publications & Abstracts 2020-2022 
 
Publications 
Journal 
Title 
Authors 
Archives of Disease in Childhood 
(2020). Published online: 06 October 2020.  
doi: 10.1136/archdischild-xx-xxxx-xxxx 
Tracheostomy trends in paediatric intensive 
care.  
Powell, J., Buckley, H.L., 
Agbeko, R., et al. 
BMC Pediatrics 20, 301 (2020). 
https://doi.org/10.1186/s12887-020-02195-6 
Does time taken by paediatric critical care 
transport teams to reach the bedside of 
critically ill children affect survival? A 
retrospective cohort study from England and 
Wales 
Seaton, S.E., Ramnarayan, P., 
Davies, P. et al. 
BMJ Open. 2020 Sep 25;10(9):e037517. 
doi: 10.1136/bmjopen-xx-xxxx-xxxx. PMID: 
32978195; PMCID: PMC7520830. 
NEUROlogical Prognosis After Cardiac 
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Scholefield BR, Martin J, Penny-
Thomas K, Evans S, Kool M, 
Parslow R, Feltbower R, Draper 
ES, Hiley V, Sitch AJ, 
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KP, Smith F; NEUROPACK 
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Routine gastric residual volume 
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Tume LN, Woolfall K, Arch B, 
Roper L, Deja E, Jones AP, et al. 
BMJ Open 2020;10:e033208. doi: 
10.1136/bmjopen-xx-xxxx-xxxx  
How, in what contexts, and why do quality 
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quality in acute hospitals? Protocol for a 
realist feasibility evaluation 
Randell R, Alvarado N, McVey L, 
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Impact on 30-day survival of time taken by a 
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Pagel, C. et al. 
BMJ Open 2020;10:e038974. doi: 
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Study protocol for a multicentre longitudinal 
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Manning JC, Latour JM, Curley 
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Harwood, R et al. 
medRxiv 2021.07.01.21259785; doi: 
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5 
Risk factors for intensive care admission 
and death amongst children and young 
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and PIMS-TS in England during the first 
pandemic year 
Ward, J L et al. 
Nat Med 28, 185–192 (2022). 
https://doi.org/10.1038/s41591-021-01578-1 
Deaths in Children and Young People in 
England following SARS-CoV-2 infection 
during the first pandemic year: a national 
study using linked mandatory child death 
reporting data 
Smith C et al. 
Implement Sci.  2022 May 26;17(1):34. doi: 
10.1186/s13012-022-01208-5. 
Interventions to optimise the outputs of 
national clinical audits to improve the quality 
of health care: a multi-method study 
including RCT 
Wright-Hughes A, Willis TA, 
Wilson S, Weller A, Lorencatto F, 
Althaf M, Seymour V, Farrin AJ, 
Francis J, Brehaut J, Ivers N, 
Alderson SL, Brown BC, 
Feltbower RG, Gale CP, 
Stanworth SJ, Hartley S, 
Colquhoun H, Presseau J, 
Walwyn R, Foy R.  
NIHR, https://doi.org/10.3310/WBKW4927 
Design and evaluation of an interactive 
quality dashboard for national clinical audit 
data: a realist evaluation 
Randell R, Alvarado 
N, Elshehaly M, McVey L, West 
RM, Doherty P, et al.  
BMJ Open, doi: 10.1136/bmjopen-2022-
061838 
Use of selective gut decontamination in 
critically ill children: protocol for the 
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Control (PICnIC) pilot study 
Alanna Brown, Paloma 
Ferrando, Mariana Popa, Gema 
Milla de la Fuente, John 
Pappachan, Brian Cuthbertson, 
Laura Drikite, Richard Feltbower, 
Theodore Gouliouris, Isobel 
Sale, Robert Shulman, Lyvonne 
N Tume, John Myburgh, Kerry 
Woolfall, David A Harrison, Paul 
R Mouncey, Kathryn M Rowan, 
Nazima Pathan 
BMJ Paediatr Open;6(1):e001300. doi: 
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Early mobilisation and rehabilitation in the 
PICU: a UK survey. 
Thompson JY, Menzies JC, 
Manning JC, McAnuff J, Brush 
EC, Ryde F, Rapley T, Pathan N, 
Brett S, Moore DJ, Geary M, 
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Noyes J, Oddie S, Vasudevan C, 
Feltbower R, Phillips B, Hain R, 
Subramanian G, Haynes A, 
Fraser LK 
National Institute for Health and Care 
Research, Southampton. 
Interventions to optimise the outputs of 
national clinical audits to improve the quality 
of health care: a multi-method study 
including RCT. 
Willis TA, Wright-Hughes A, 
Weller A, Alderson SL, Wilson S, 
Walwyn R, Wood S, Lorencatto 
F, Farrin A, Hartley S, Francis J, 
Seymour V, Brehaut J, 
Colquhoun H, Grimshaw J, Ivers 
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Effect of High-Flow Nasal Cannula Therapy 
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Therapy on Liberation From Respiratory 
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A, Drikite L, et al. 
JAMA, doi:10.1001/jama.2022.3367 
Effect of High-Flow Nasal Cannula Therapy 
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Respiratory Support in Critically Ill Children: 
A Randomized Clinical Trial 
Ramnarayan P, Richards-Belle 
A, Drikite L, et al. 
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Linkage of National Congenital Heart 
Disease Audit data to hospital, critical care 
and mortality national data sets to enable 
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Health Technol Assess; 26:1-114. doi: 
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Co-ordinated multidisciplinary intervention to 
reduce time to successful extubation for 
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Blackwood B, Morris KP, Jordan 
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higher risk of severe disease and death after 
hospitalisation with SARS-CoV-2 infection in 
children and young people: A systematic 
review and individual patient meta-analysis 
Harwood R, Yan H, Talawila Da 
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M, Whittaker E, Saatci D, Davis 
PJ, Luyt K, Draper ES, Kenny 
SE, Fraser LK, Viner RM 

 
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Nat Med. 2022 Jan;28(1):193-200. doi: 
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Dec 20. PMID: 34931076 
Risk factors for PICU admission and death 
among children and young people 
hospitalized with COVID-19 and PIMS-TS in 
England during the first pandemic year 
Ward JL, Harwood R, Smith C, 
Kenny S, Clark M, Davis PJ, 
Draper ES, Hargreaves D, 
Ladhani S, Linney M, Luyt K, 
Turner S, Whittaker E, Fraser 
LK, Viner RM 
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Lactate, Base Excess, and the Pediatric 
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Parslow RC. 
BMJ Open. 12. e057343. 10.1136/bmjopen-
xx-xxxx-xxxx. 
Linkage of National Congenital Heart 
Disease Audit data to hospital, critical care 
and mortality national data sets to enable 
research focused on quality improvement 
Pujol, Ferran & Pagel, Christina 
& Brown, Katherine & Doidge, 
James & Feltbower, Richard & 
Franklin, Rodney & González-
Izquierdo, Arturo & Gould, Doug 
& Norman, Lee & Stickley, John 
& Taylor, Julie & Crowe, Sonya. 
 
 
 

 
45 
PICANet State of the Nation Report Appendices 2023 
Abstracts 
Published Abstracts 
Title 
Authors 
8th Congress of the European Academy of 
Paediatric Societies 2020, Virtual 16 -19 October 2020 
Epidemiology of cardiopulmonary 
resuscitation in critically ill children 
admitted to Paediatric Intensive Care 
Units across England.  
Mustafa, K., Buckley, 
H., Feltbower, R., et 
al.   
Archives of Disease in Childhood; London Vol. 105, Iss. 
Suppl 1, (Oct 2020): A99-A99. 
DOI:10.1136/archdischild-2020-rcpch.235   
G272 Intensive care admissions in 
children with down syndrome: trends in 
incidence and outcome  
Rapaport, B; Marder, 
E; Smyth, A R; 
Parslow, R C; Vyas, H; 
et al. 
Accepted Abstracts 
Title 
Authors 
World Federation of Pediatric Intensive and Critical 
Care Society 2020, Mexico.  
Factors associated with unplanned 
readmissions to paediatric intensive care 
units in England 
Buckley, H., Plunkett, 
A., Morris, K., et al. 
World Federation of Pediatric Intensive 
and Critical Care Society 2020, Virtual.  
 
Epidemiology of cardiopulmonary 
resuscitation in critically ill children 
admitted to Paediatric Intensive Care 
Units across England 
Mustafa, K., Buckley, 
H., Feltbower, R., et 
al. 
 
 
    

 
46 
PICANet State of the Nation Report Appendices 2023 
Data Access Requests Fulfilled (sent to applicant) January 2022 - 
December 2022 
 
Reference 
numbers 
Requester (Name, Position and Place of 
work/study): 
Data Request: 
Data Level of Request 
P091 
Tiffany Watson-Koszel, Policy Manager, NHS 
England 
COVID-19 and PIMS-TS data 
Identifiable data for linkage  
P007 
HQIP274 
Amendment 
Elizabeth S Draper, Professor of Perinatal and 
Paediatric Epidemiology, University of Leicester 
The changing demographic of preterm born children 
admitted to paediatric intensive care 
De-identified Individual (additional 
fields to supplement an earlier data 
provision) 
P083 
HQIP406 
Lorna Fraser, Professor of Epidemiology, 
University of York 
Trends in the Prevalence and Complexity of Children 
with a Life-Limiting or Life-Threatening condition in 
Wales 
De-identified Individual + Identifiable 
for Linkage 
P092 
HQIP416 
Paul Mouncey, Head of Research, Intensive 
Care National Audit & Research Centre 
(ICNARC) 
PICnIC: A pilot cluster randomised clinical trial of the 
use of selective gut decontamination in critically ill 
children (Paediatric Intensive Care and Infection 
Control) 
Summary data 
P096 
ISR091 
Reinout Mildner, NIHR Clinical Trials Scholar 
and PICU Consultant, Birmingham Children's 
Hospital 
Duration of invasive ventilation against diagnosis, for 
Invasive ventilation weaning NAVA mode RCT 
Summary data 
 
If you require further details of the Data Requests made to PICANet please contact the team by email. 

 
 
 
 
 
Richard Feltbower 
Hannah Buckley 
Christopher Leahy 
Hannah Lever 
Paul Micklethwaite 
Lee Norman 
Georgina Tayler-Barrett 
Thomas Simpson 
Laura Stubbs 
 
PICANet 
Leeds Institute for Data Analytics 
School of Medicine 
University of Leeds 
Clarendon Way 
Leeds 
LS2 9JT 
 
Elizabeth Draper 
Emily Evans 
Hari Krishnan 
Lyn Palmer 
Martin Perkins 
Sarah Seaton 
Rachel Shorthose 
 
PICANet 
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University of Leicester 
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Leicester 
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