NeoEPOCH: Neonatal Electronic health record data for Point Of Care Health research and continuous incremental improvement in neonatal care
Lead Research Organisation:
Imperial College London
Department Name: School of Public Health
Abstract
1 in 11 UK babies are born prematurely; many of these need neonatal care that involves medical decisions about every part of a baby's care (like how best to support breathing). Many babies who require neonatal care have medical and neurological problems that affect them throughout their lives; these may be influenced by decisions made during their neonatal stay.
The ideal way to work out which clinical decision (i.e. which type of breathing support to use) is the best is a randomised trial. Here each baby has an equal chance of being given each decision (type of breathing support) and this is chosen by chance, like tossing a coin. By including lots of babies we can work out which decision (type of breathing support) works best. Unfortunately randomised trials are very expensive and burdensome because it is time-consuming to collect all the information. As a result, only a small number of neonatal clinical decisions have been tested in randomised trials and so most decisions are only educated guesses.
I want to make randomised clinical trials cheaper and easier so all day-to-day neonatal decisions can be based on the best research - randomised clinical trials. I plan to do this is by getting rid of the most expensive part, data collection. At the moment this is done by paying a researcher to check each baby's medical notes. I want to get all the information straight from a baby's electronic health record (EHR), a computerised version of the medical notes. Since 2007 all UK neonatal units have used one EHR system. Information from this EHR, on all babies admitted for neonatal care (with names and other identifying information removed), is held in the National Neonatal Research Database (NNRD). The NNRD is already used for other purposes, I want to use it for randomised trials to make them much cheaper and easier. These can be called Point-of-Care Trials (PoCT).
There are a number of problems to solve. Firstly, information in the EHR may not be completely accurate. We will deal with this by
1. Looking at other EHR systems to work out the best way to measure and report the accuracy of the neonatal EHR
2. Looking to see how other people have made EHR data more accurate
3. Using these techniques and measuring to see if they work using a cluster randomised controlled trial; this is like a larger randomised clinical trial but instead of each baby having an equal chance of getting one decision or another, each neonatal unit will have an equal chance of having one technique or another
We think that if parents are more involved in their baby's EHR data it will be more accurate. We will test this by asking parents to help us to help them use their baby's EHR data. Then we will try this out in the same cluster randomised trial to see if it makes EHR more accurate. We think that taking these steps will make the EHR accurate enough for PoCT, but we will also work out mathematically how to use EHR data even if it is not completely accurate.
Secondly, we want to make sure that PoCT will ask the right research questions in the right ways. We will do this by
1. Asking interested groups (doctors, nurses, parents, patients, etc.) what they think the most important "outcomes" for PoCT are. An "outcome" is a result of a trial, like whether a baby needs oxygen at home
2. Asking the same groups what the most important clinical decisions (like how to support a baby's breathing or what milk to start feeding with) are to test in PoCT
Thirdly, we want to show that we can carry out a PoCT using the neonatal EHR. To do this we will run a small PoCT over 20 neonatal units and one year. We will measure how accurate it is and whether it is easier and cheaper.
Finally we want to make sure that knowledge from PoCT can be quickly and effectively communicated across the NHS to improve the way babies are looked after so we will learn from the successes and mistakes of another health system that already does this.
The ideal way to work out which clinical decision (i.e. which type of breathing support to use) is the best is a randomised trial. Here each baby has an equal chance of being given each decision (type of breathing support) and this is chosen by chance, like tossing a coin. By including lots of babies we can work out which decision (type of breathing support) works best. Unfortunately randomised trials are very expensive and burdensome because it is time-consuming to collect all the information. As a result, only a small number of neonatal clinical decisions have been tested in randomised trials and so most decisions are only educated guesses.
I want to make randomised clinical trials cheaper and easier so all day-to-day neonatal decisions can be based on the best research - randomised clinical trials. I plan to do this is by getting rid of the most expensive part, data collection. At the moment this is done by paying a researcher to check each baby's medical notes. I want to get all the information straight from a baby's electronic health record (EHR), a computerised version of the medical notes. Since 2007 all UK neonatal units have used one EHR system. Information from this EHR, on all babies admitted for neonatal care (with names and other identifying information removed), is held in the National Neonatal Research Database (NNRD). The NNRD is already used for other purposes, I want to use it for randomised trials to make them much cheaper and easier. These can be called Point-of-Care Trials (PoCT).
There are a number of problems to solve. Firstly, information in the EHR may not be completely accurate. We will deal with this by
1. Looking at other EHR systems to work out the best way to measure and report the accuracy of the neonatal EHR
2. Looking to see how other people have made EHR data more accurate
3. Using these techniques and measuring to see if they work using a cluster randomised controlled trial; this is like a larger randomised clinical trial but instead of each baby having an equal chance of getting one decision or another, each neonatal unit will have an equal chance of having one technique or another
We think that if parents are more involved in their baby's EHR data it will be more accurate. We will test this by asking parents to help us to help them use their baby's EHR data. Then we will try this out in the same cluster randomised trial to see if it makes EHR more accurate. We think that taking these steps will make the EHR accurate enough for PoCT, but we will also work out mathematically how to use EHR data even if it is not completely accurate.
Secondly, we want to make sure that PoCT will ask the right research questions in the right ways. We will do this by
1. Asking interested groups (doctors, nurses, parents, patients, etc.) what they think the most important "outcomes" for PoCT are. An "outcome" is a result of a trial, like whether a baby needs oxygen at home
2. Asking the same groups what the most important clinical decisions (like how to support a baby's breathing or what milk to start feeding with) are to test in PoCT
Thirdly, we want to show that we can carry out a PoCT using the neonatal EHR. To do this we will run a small PoCT over 20 neonatal units and one year. We will measure how accurate it is and whether it is easier and cheaper.
Finally we want to make sure that knowledge from PoCT can be quickly and effectively communicated across the NHS to improve the way babies are looked after so we will learn from the successes and mistakes of another health system that already does this.
Technical Summary
Aims
1. Demonstrate feasibility, efficacy and efficiency of neonatal point-of-care trials (PoCT) using Electronic Health Record (EHR) data held by the National Neonatal Research Database (NNRD)
2. Develop a platform to leverage PoCT to improve neonatal care
Objectives and methods
Measure neonatal EHR data quality
- Methods: internal/external validation
Synthesise evidence for improving EHR data
- Methods: systematic review, meta-analysis
Develop parent-centred EHR data; test it alongside interventions identified from systematic review to see if it improves data quality
- Methods: Focus group, cluster randomised trial
Develop a core outcome set for neonatal PoCT
- Method: Delphi consensus process
Predict the influence of variable data quality on PoCT
- Method: Statistical modelling
Complete a pilot PoCT
- Method: A multi-centre, superiority, randomised point of care trial (WHEAT)
Map and prioritise neonatal treatment uncertainties
- Method: Delphi consensus process
Develop best practice for implementing PoCT results
- Methods: qualitative interviews with leaders/stakeholders
Scientific opportunities:
NeoEPOCH will reduce waste in neonatal research by testing multiple uncertainties in large pragmatic trials, identifying research questions of importance and disseminating trial results. NeoEPOCH aims to increase research participation by making parent and public participation central and will develop into an open platform for POCT. By facilitating collaborative, efficient, national trials NeoEPOCH will increase the attraction of UK neonatal services to multinational and commercial research funders.
Medical opportunities:
NeoEPOCH meets to need to improve neonatal clinical care by rapidly reducing treatment uncertainties, thus making it truly evidence based. By building a research platform around parent involvement NeoEPOCH aims to improve participation in research and build public trust in electronic health record data.
1. Demonstrate feasibility, efficacy and efficiency of neonatal point-of-care trials (PoCT) using Electronic Health Record (EHR) data held by the National Neonatal Research Database (NNRD)
2. Develop a platform to leverage PoCT to improve neonatal care
Objectives and methods
Measure neonatal EHR data quality
- Methods: internal/external validation
Synthesise evidence for improving EHR data
- Methods: systematic review, meta-analysis
Develop parent-centred EHR data; test it alongside interventions identified from systematic review to see if it improves data quality
- Methods: Focus group, cluster randomised trial
Develop a core outcome set for neonatal PoCT
- Method: Delphi consensus process
Predict the influence of variable data quality on PoCT
- Method: Statistical modelling
Complete a pilot PoCT
- Method: A multi-centre, superiority, randomised point of care trial (WHEAT)
Map and prioritise neonatal treatment uncertainties
- Method: Delphi consensus process
Develop best practice for implementing PoCT results
- Methods: qualitative interviews with leaders/stakeholders
Scientific opportunities:
NeoEPOCH will reduce waste in neonatal research by testing multiple uncertainties in large pragmatic trials, identifying research questions of importance and disseminating trial results. NeoEPOCH aims to increase research participation by making parent and public participation central and will develop into an open platform for POCT. By facilitating collaborative, efficient, national trials NeoEPOCH will increase the attraction of UK neonatal services to multinational and commercial research funders.
Medical opportunities:
NeoEPOCH meets to need to improve neonatal clinical care by rapidly reducing treatment uncertainties, thus making it truly evidence based. By building a research platform around parent involvement NeoEPOCH aims to improve participation in research and build public trust in electronic health record data.
Planned Impact
This fellowship will benefit the following groups:
1. Patients
- Greater Electronic Health Record (EHR) data quality will: a) improve patient care by reducing errors and improving communication; b) facilitate bench-marking between units reducing variation and inequalities in care; c) improve national audit programmes in identifying and disseminating best practice.
- In the medium-term, the large pragmatic point-of-care trials (PoCT) will improve the neonatal evidence base, impacting and improving health: conditions with long-term health effects (i.e. necrotising enterocolitis) are influenced by day-to-day clinical decisions (i.e. choice of milk feed); PoCT will allow these to be rigorously tested.
- NeoEPOCH will involve ex-preterm children in throughout to ensure that future research is responsive and relevant to patients.
2. Parents and the wider public
- By developing an intervention that places parents at the centre of their baby's EHR data we hope to empower parents to improve their baby's data quality.
- This regular provision of information to parents has been demonstrated to improve confidence in, and satisfaction with, neonatal units.
- NeoEPOCH will embed parent and public involvement in neonatal research at multiple levels. This is primarily to improve the quality of the research, but will also make research accountable, relevant and responsive, increasing accountability and trust in neonatal research and EHR data.
- We plan to demonstrate tangible benefits from the careful academic use of EHR data, and hope to improve public perceptions of "big health data" following recent negative publicity (care.data).
- Reducing the cost and burden of research aims to increase the number of neonatal units that participate in clinical trials. This should benefit patient care; research activity is associated with better clinical outcomes.
3. Neonatal health professionals
- The main medium term impact will be reduced uncertainty in clinical decision-making following large clinically driven PoCT.
- Health professionals will benefit from a research infrastructure that aligns research questions with clinical need.
4. Industry
- Integration of the neonatal EHR in research will benefit Clevermed, the commercial provider of the EHR platform (BadgerNet).
- The PoCT model, developed in collaboration with Clevermed, is readily scalable to other healthcare settings and other EHR platforms.
- Increasing the number of UK neonatal units participating in clinical trials will make the NHS more attractive for children's research, adding to the globally recognised excellence of the NIHR Children's Research Network (most global first recruits of any research network in 2012-13).
- The large trials that NeoEPOCH aims to facilitate are ideally suited for testing medical devices (such as ventilation strategies) or nutritional supplements (human milk fortifier) attracting commercial research and development into the NHS and the UK.
5. Policy makers within national government
- Exploring processes and experiences of other organisations implementing a "learning healthcare system" will inform and guide the development of such reorganisations in the UK.
6. Charities
- Involving Bliss and other charities will help them achieve their objectives, placing parents and patients at the heart neonatal research.
- In the medium to long-term, this will make neonatal research more responsive to charity priorities and provide them with tangible achievements, impacting their fund-raising capabilities.
7. The fellow and research staff
- Training, experience and recognition stemming from this fellowship will help me develop into a neonatal academic leader.
- The fellowship intends to train a research statistician to become an independent researcher and help to develop a National Neonatal Clinical Improvement Unit.
1. Patients
- Greater Electronic Health Record (EHR) data quality will: a) improve patient care by reducing errors and improving communication; b) facilitate bench-marking between units reducing variation and inequalities in care; c) improve national audit programmes in identifying and disseminating best practice.
- In the medium-term, the large pragmatic point-of-care trials (PoCT) will improve the neonatal evidence base, impacting and improving health: conditions with long-term health effects (i.e. necrotising enterocolitis) are influenced by day-to-day clinical decisions (i.e. choice of milk feed); PoCT will allow these to be rigorously tested.
- NeoEPOCH will involve ex-preterm children in throughout to ensure that future research is responsive and relevant to patients.
2. Parents and the wider public
- By developing an intervention that places parents at the centre of their baby's EHR data we hope to empower parents to improve their baby's data quality.
- This regular provision of information to parents has been demonstrated to improve confidence in, and satisfaction with, neonatal units.
- NeoEPOCH will embed parent and public involvement in neonatal research at multiple levels. This is primarily to improve the quality of the research, but will also make research accountable, relevant and responsive, increasing accountability and trust in neonatal research and EHR data.
- We plan to demonstrate tangible benefits from the careful academic use of EHR data, and hope to improve public perceptions of "big health data" following recent negative publicity (care.data).
- Reducing the cost and burden of research aims to increase the number of neonatal units that participate in clinical trials. This should benefit patient care; research activity is associated with better clinical outcomes.
3. Neonatal health professionals
- The main medium term impact will be reduced uncertainty in clinical decision-making following large clinically driven PoCT.
- Health professionals will benefit from a research infrastructure that aligns research questions with clinical need.
4. Industry
- Integration of the neonatal EHR in research will benefit Clevermed, the commercial provider of the EHR platform (BadgerNet).
- The PoCT model, developed in collaboration with Clevermed, is readily scalable to other healthcare settings and other EHR platforms.
- Increasing the number of UK neonatal units participating in clinical trials will make the NHS more attractive for children's research, adding to the globally recognised excellence of the NIHR Children's Research Network (most global first recruits of any research network in 2012-13).
- The large trials that NeoEPOCH aims to facilitate are ideally suited for testing medical devices (such as ventilation strategies) or nutritional supplements (human milk fortifier) attracting commercial research and development into the NHS and the UK.
5. Policy makers within national government
- Exploring processes and experiences of other organisations implementing a "learning healthcare system" will inform and guide the development of such reorganisations in the UK.
6. Charities
- Involving Bliss and other charities will help them achieve their objectives, placing parents and patients at the heart neonatal research.
- In the medium to long-term, this will make neonatal research more responsive to charity priorities and provide them with tangible achievements, impacting their fund-raising capabilities.
7. The fellow and research staff
- Training, experience and recognition stemming from this fellowship will help me develop into a neonatal academic leader.
- The fellowship intends to train a research statistician to become an independent researcher and help to develop a National Neonatal Clinical Improvement Unit.
Organisations
- Imperial College London (Fellow, Lead Research Organisation)
- Örebro University (Collaboration)
- University College London (Collaboration)
- University of Manchester (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- McGill University (Collaboration)
- UNIVERSITY HOSPITALS BRISTOL NHS FOUNDATION TRUST (Collaboration)
- Center for Medical Technology Policy (Collaboration)
- Dalhousie University (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Farr Institute of Health Informatics Research (Collaboration)
- University of Worcester (Collaboration)
- Cardiff University (Collaboration)
- Cambridge Digital Health Ltd (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- Monash University (Collaboration)
- UNIVERSITY OF SYDNEY (Collaboration)
People |
ORCID iD |
Chris Gale (Principal Investigator / Fellow) |
Publications
Gale C
(2020)
Randomised Controlled Trials for Informing Perinatal Care.
in Neonatology
Binder C
(2018)
Body Composition following Necrotising Enterocolitis in Preterm Infants.
in Neonatology
Helenius K
(2020)
Association of Early Postnatal Transfer and Birth Outside a Tertiary Hospital With Mortality and Severe Brain Injury in Extremely Preterm Infants: Observational Cohort Study With Propensity Score Matching
in Obstetrical & Gynecological Survey
Bogiatzopoulou A
(2020)
COVID-19 in children: what did we learn from the first wave?
in Paediatrics and Child Health
Henry CJ
(2022)
Neonatal sepsis: a systematic review of core outcomes from randomised clinical trials.
in Pediatric research
Hayes R
(2023)
Neonatal sepsis definitions from randomised clinical trials.
in Pediatric research
Molloy EJ
(2018)
Developing core outcome set for women's, newborn, and child health: the CROWN Initiative.
in Pediatric research
Molloy EJ
(2019)
Parent, child and public involvement in child health research: core value not just an optional extra.
in Pediatric research
Baba A
(2023)
Heterogeneity and Gaps in Reporting Primary Outcomes From Neonatal Trials.
in Pediatrics
Webbe J
(2023)
Strengthening Reporting of Neonatal Trials.
in Pediatrics
Duffy J
(2020)
Standardising definitions for the pre-eclampsia core outcome set: A consensus development study
in Pregnancy Hypertension
Duffy J
(2016)
A protocol for developing, disseminating, and implementing a core outcome set for pre-eclampsia
in Pregnancy Hypertension: An International Journal of Women's Cardiovascular Health
Kwakkenbos L
(2018)
Protocol for the development of a CONSORT extension for RCTs using cohorts and routinely collected health data.
in Research integrity and peer review
Brunton G
(2020)
Adding value to core outcome set development using multimethod systematic reviews.
in Research synthesis methods
Pinchefsky EF
(2021)
Nutrition and management of glycemia in neonates with neonatal encephalopathy treated with hypothermia.
in Seminars in fetal & neonatal medicine
Rees P
(2020)
Childhood Health and Educational Outcomes After Neonatal Abstinence Syndrome: A Systematic Review and Meta-analysis.
in The Journal of pediatrics
Gale C
(2021)
The ability of the neonatal immune response to handle SARS-CoV-2 infection - Authors' reply
in The Lancet Child & Adolescent Health
Gale C
(2018)
Family Integrated Care for very preterm infants: evidence for a practice that seems self-evident?
in The Lancet. Child & adolescent health
Medvedev MM
(2020)
Development and validation of a simplified score to predict neonatal mortality risk among neonates weighing 2000 g or less (NMR-2000): an analysis using data from the UK and The Gambia.
in The Lancet. Child & adolescent health
Gale C
(2021)
Characteristics and outcomes of neonatal SARS-CoV-2 infection in the UK: a prospective national cohort study using active surveillance.
in The Lancet. Child & adolescent health
Gale C
(2017)
Towards greater efficiency in neonatal clinical research.
in The Lancet. Child & adolescent health
Title | A short video animation explaining the COIN (Core Outcomes In Neonatology) Project |
Description | We developed a simple animation to explain in plain English the need for a neonatal core outcome set and how members of the public, parents, patients and health professionals can be involved. |
Type Of Art | Film/Video/Animation |
Year Produced | 2016 |
Impact | This animation has driven international involvement in the COIN project |
URL | https://youtu.be/IPp1169Q_fY |
Description | Developed and implemented the Research Skills Training Day: a national training day for neonatal health professionals seeking to develop research skills |
Geographic Reach | National |
Policy Influence Type | Influenced training of practitioners or researchers |
Impact | Improved awareness and training in research methodology and processes, including obtaining informed consent, for paediatricians and trainees in the United Kingdom. |
URL | https://www.bapm.org/events/training-basic-research-skills-paediatric-professionals |
Description | Development of a working definition for "brain injury occurring at or soon after birth" for the Department of Health (UK) National Maternity Ambition |
Geographic Reach | National |
Policy Influence Type | Contribution to a national consultation/review |
URL | https://www.gov.uk/government/news/new-ambition-to-halve-rate-of-stillbirths-and-infant-deaths |
Description | Directly informed NHS England shielding policy directly impacting 85,000 children, and UK and WHO guidance for management of infants born to mothers with confirmed/suspected SARS-CoV-2 |
Geographic Reach | Multiple continents/international |
Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
Impact | Directly informed NHS England shielding policy directly impacting 85,000 children, and UK and WHO guidance for management of infants born to mothers with confirmed/suspected SARS-CoV-2 |
Description | A Feasibility Study of No Routine Gastric Residual Volume measurement in mechanically ventilated Infants and Children: the GASTRIC Study |
Amount | £343,123 (GBP) |
Funding ID | 16/94/02 |
Organisation | National Institute for Health Research |
Department | Health Technology Assessment Programme (HTA) |
Sector | Public |
Country | United Kingdom |
Start | 03/2018 |
End | 04/2020 |
Description | A partnership to extend the research utility of a source of real-world health data, the UK National Neonatal Research Database |
Amount | £551,152 (GBP) |
Funding ID | MR/T016752/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 03/2020 |
End | 09/2022 |
Description | Accelerating the development of a perinatal platform trial to efficiently evaluate the effectiveness of multiple interventions in maternity and neonatal care |
Amount | £199,592 (GBP) |
Funding ID | NIHR156043 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 03/2023 |
End | 02/2024 |
Description | Calculating incidence of Brain Injuries for the National Maternity Ambition and relationship with ethnicity and deprivation |
Amount | £34,200 (GBP) |
Organisation | Department of Health (DH) |
Sector | Public |
Country | United Kingdom |
Start | 01/2021 |
End | 12/2021 |
Description | Department of Health - defining brain injuries for the national maternity ambition |
Amount | £19,000 (GBP) |
Organisation | Government of Catalonia |
Department | Department of Health |
Sector | Public |
Country | Spain |
Start | 11/2016 |
End | 03/2017 |
Description | Development, validation, and implementation of a knowledge synthesis reporting guideline for outcome measurement instruments in health research |
Amount | $392,010 (CAD) |
Organisation | Canadian Institutes of Health Research |
Sector | Public |
Country | Canada |
Start | 03/2021 |
End | 03/2024 |
Description | Discover-NOW - The Health Data Research Hub for Real World Evidence |
Amount | £4,400,000 (GBP) |
Organisation | Health Data Research UK |
Sector | Private |
Country | United Kingdom |
Start | 09/2019 |
End | 10/2024 |
Description | Health Technology Assessment |
Amount | £2,400,000 (GBP) |
Funding ID | NIHR134216 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 08/2022 |
End | 09/2027 |
Description | Impact of SARS-CoV-2 exposure during pregnancy and the neonatal period on infants' neurodevelopment and social-emotional outcomes (SINEPOST) |
Amount | £151,287 (GBP) |
Funding ID | GN2905 |
Organisation | Action Medical Research |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 03/2021 |
End | 02/2023 |
Description | MRC Transition Support Fellowship |
Amount | £386,193 (GBP) |
Funding ID | MR/V036866/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 06/2021 |
End | 06/2023 |
Description | Medical Research Future Fund - Rare Cancers, Rare Diseases and Unmet Need Initiative |
Amount | $1,606,825 (AUD) |
Organisation | Australian Government |
Sector | Public |
Country | Australia |
Start | 03/2019 |
End | 03/2024 |
Description | Meeting global need to improve newborn care through real-world-health-data-facilitated, digital-technology-supported randomised clinical trials |
Amount | £656,698 (GBP) |
Funding ID | MR/X009831/1 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 03/2023 |
End | 03/2025 |
Description | NHMRC-NIHR Collaborative Research Grant |
Amount | $739,020 (AUD) |
Funding ID | 2014792 |
Organisation | National Health and Medical Research Council |
Sector | Public |
Country | Australia |
Start | 08/2022 |
End | 09/2027 |
Description | Optimising newborn nutrition during therapeutic hypothermia: an observational study using routinely collected data |
Amount | £92,988 (GBP) |
Funding ID | HTA/16/79/03 |
Organisation | National Institute for Health Research |
Department | Health Technology Assessment Programme (HTA) |
Sector | Public |
Country | United Kingdom |
Start | 09/2017 |
End | 04/2019 |
Description | Research Driven Improvement Programme |
Amount | £55,000 (GBP) |
Funding ID | IP006 |
Organisation | North West London CLAHRC |
Sector | Public |
Country | United Kingdom |
Start | 09/2016 |
End | 04/2018 |
Description | Should electronic patient record data be used for neonatal clinical trials? - PhD fellowship for Miss Sena Jawad |
Amount | £17,300 (GBP) |
Organisation | Westminster Medical School |
Sector | Academic/University |
Country | United Kingdom |
Start | 03/2017 |
End | 09/2019 |
Description | The POOL Study: Establishing the safety of waterbirth for mothers and babies: A cohort study with nested qualitative component |
Amount | £896,901 (GBP) |
Funding ID | 16/149/01 |
Organisation | National Institute for Health Research |
Department | Health Technology Assessment Programme (HTA) |
Sector | Public |
Country | United Kingdom |
Start | 03/2018 |
End | 04/2023 |
Description | Using electronic health record or disease registry data for clinical trials - a framework of practice |
Amount | £72,240 (GBP) |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 08/2017 |
End | 08/2019 |
Description | • Better Use of Data to Improve Parent Satisfaction (BUDS): a mixed method project using quality improvement methodology to improve parent experience of neonatal care - PhD fellowship for Susanna Sakonidou |
Amount | £407,681 (GBP) |
Funding ID | DRF-2017-10-172 |
Organisation | Trainees Coordinating Centre (TCC) |
Sector | Public |
Country | United Kingdom |
Start | 08/2017 |
End | 09/2019 |
Description | • CONSORT Extension for Trials Conducted in Existing Data Structures, Including Researcher-generated Cohorts, Registries, Electronic Health Records, and Administrative Databases |
Amount | $133,876 (CAD) |
Funding ID | 389515 |
Organisation | Canadian Institutes of Health Research |
Sector | Public |
Country | Canada |
Start | 03/2018 |
End | 03/2020 |
Description | • The WHEAT International Trial: WithHolding Enteral feeds Around red cell Transfusion to prevent necrotizing enterocolitis in preterm neonates: an international, multi-centre, randomized controlled trial. |
Amount | $2,135,691 (CAD) |
Funding ID | 453318 |
Organisation | Canadian Institutes of Health Research |
Sector | Public |
Country | Canada |
Start | 08/2021 |
End | 03/2025 |
Title | COIN - Core Outcomes in Neonatology |
Description | We developed a core outcome set for clinical trials and other research studies involving infants receiving neonatal care in a high-income setting. This core outcome set for neonatology will help standardise outcome selection in clinical trials and ensure these are relevant to those most affected by neonatal care. |
Type Of Material | Physiological assessment or outcome measure |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | This core outcome set has been taken up nationally (Scottish Neonatal Minimum Dataset) and internationally (the Australian GenV cohort study) and by the NIHR and MRC for future neonatal trials. |
URL | http://www.comet-initiative.org/Studies/Details/842 |
Title | COSIOL - A core outcome set for trials on induction of labour |
Description | A set of core outcomes to be minimally reported in trials on induction of labour. |
Type Of Material | Physiological assessment or outcome measure |
Year Produced | 2018 |
Provided To Others? | Yes |
Impact | This core outcome set has been developed and is currently under review by a medical journal. Trials on induction of labour should include this core outcome set to standardise reporting. |
Title | Consolidated Standards of Reporting Trials (CONSORT) extension for trials using Cohorts and Routinely Collected Health Data |
Description | We developed a CONSORT extension for Trials Conducted Using Cohorts and Routinely Collected Health Data items to improve the transparency and completeness of reporting for such trials. |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2020 |
Provided To Others? | Yes |
Impact | This reporting guideline has been used to evaluate the completeness and transparency of reporting of randomised controlled trials (RCTs) conducted using routinely collected health data. |
Title | Modelling the impact of variation in data quality on point-of-care clinical trials |
Description | Development of statistical modelling techniques for incorporating variation in data quality for clinical trials using routinely collected clinical data |
Type Of Material | Model of mechanisms or symptoms - human |
Provided To Others? | No |
Impact | We have employed a research statistician who will undertake the development of statistical approaches to model and address limitations in data completeness and accuracy in clinical trials that use routinely collected electronic health record data. |
Title | Parents' Experiences of Communication in Neonatal Care (PEC): a neonatal survey refined for real-time parent feedback |
Description | Parents' Experiences of Communication in Neonatal Care (PEC): a neonatal survey refined for real-time parent feedback Co-led by a parent representative, we recruited a convenience sample of parents of infants in a London tertiary neonatal unit. Our steering group selected questions from the existing retrospective 61-question Picker survey (2014), added and revised questions assessing communication and parent involvement. We established face validity, ensuring questions adequately captured the topic, conducted parent cognitive interviews to evaluate parental understanding of questions,and adapted the survey in three revision cycles. We evaluated survey performance. The revised Parents' Experiences of Communication in Neonatal Care (PEC) survey contains 28 questions (10 new) focusing on communication and parent involvement. |
Type Of Material | Physiological assessment or outcome measure |
Year Produced | 2022 |
Provided To Others? | Yes |
Impact | Parents' Experiences of Communication in Neonatal Care (PEC) is being used by NHS trusts to evaluate parent experience with communication and wider neonatal care |
URL | https://fn.bmj.com/content/early/2023/01/30/archdischild-2022-324548.long |
Title | Systematic review and qualitative data synthesis to inform core outcome set development |
Description | We have demonstrated the feasibility and value of using systematic review and qualitative data synthesis to identify outcomes of importance to parents, patients and other stakeholders. This provides researchers with an alternative methodology to identify outcomes when developing core outcome sets. |
Type Of Material | Physiological assessment or outcome measure |
Year Produced | 2016 |
Provided To Others? | Yes |
Impact | We presented this work at the COMET VI conference in Amsterdam: http://www.comet-initiative.org/assets/downloads/COMET%20VI%20outline_latest.pdf |
URL | https://issuu.com/drcgale/docs/final_comet_qualsynthaddedvalue_7no |
Title | Use of routinely recorded neonatal data in prospective randomised controlled trials |
Description | I have pioneered the use of routinely recorded neonatal data held in the National Neonatal Research Database (NNRD) for prospective neonatal clinical trials through the WHEAT pilot trial, WHEAT trial and neoGASTRIC trials. This has reduced burden on clinical teams and has increased trial efficiency. Within the WHEAT pilot trial I have demonstrated the validity and accuracy of using routinely recorded data for trials in the neonatal context. |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2021 |
Provided To Others? | Yes |
Impact | Increasing numbers of neonatal trials using the NNRD for some data capture (including BASE trial) |
Description | A Feasibility Study of routine Gastric residual volume measurement in mechanically ventilated Infants and Children: the GASTRIC study |
Organisation | University Hospitals Bristol NHS Foundation Trust |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | The GASTRIC feasibility study will answer the question: Is it feasible to conduct a study identifying the impact of not measuring gastric residual volume on clinical outcomes in mechanically ventilated infants and children receiving enteral feeding? Our contribution to this project will be to provide neonatal clinical input, expertise in relation to questionnaire development and Delphi consensus methodology and to provide pilot data from the National Neonatal Research Database. |
Collaborator Contribution | University Hospitals Bristol will lead and sponsor this study and the Liverpool Clinical Trials Unit will coordinate it. |
Impact | No outputs yet. This is a multidisciplinary collaboration including clinicians, nurses, dieticians, epidemiologists, clinical trialists, parents, patients and qualitative researchers. |
Start Year | 2017 |
Description | A Feasibility Study of routine Gastric residual volume measurement in mechanically ventilated Infants and Children: the GASTRIC study |
Organisation | University of Liverpool |
Department | Clinical Trials Collabortative |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | The GASTRIC feasibility study will answer the question: Is it feasible to conduct a study identifying the impact of not measuring gastric residual volume on clinical outcomes in mechanically ventilated infants and children receiving enteral feeding? Our contribution to this project will be to provide neonatal clinical input, expertise in relation to questionnaire development and Delphi consensus methodology and to provide pilot data from the National Neonatal Research Database. |
Collaborator Contribution | University Hospitals Bristol will lead and sponsor this study and the Liverpool Clinical Trials Unit will coordinate it. |
Impact | No outputs yet. This is a multidisciplinary collaboration including clinicians, nurses, dieticians, epidemiologists, clinical trialists, parents, patients and qualitative researchers. |
Start Year | 2017 |
Description | Advancing Large, collectively Prioritized, efficient trials for Health outcomes Assessment worldwide. The ALPHA Collaboration: Embedding mega-trials in perinatal care |
Organisation | University of Sydney |
Country | Australia |
Sector | Academic/University |
PI Contribution | Methodological support in relation to using routinely recorded clinical data, discussing inclusion benefit and streamlining consent processes and use of the WHEAT trial as an international collaborative mega-trial. |
Collaborator Contribution | International collaboration, publicity. |
Impact | No outputs to date. |
Start Year | 2017 |
Description | Biomechanics of Fetal and Neonatal Movements: Application to Musculoskeletal Health |
Organisation | Imperial College London |
Department | Imperial College Business School |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Engineering lead, Dr Niamh Nowlan, is a Senior Lecturer in the Department of Bioengineering. She leads a research programme focussing on the biomechanics of skeletal development; the study of how mechanical forces due to fetal movements influence and direct growth and morphogenesis of the bones and joints. Co-I Dr Angela Kedgley is a Lecturer in the Department of Bioengineering. Her research interests encompass the mechanics of joint motion in the human body, particularly the hand and wrist. Dr Kedgley's experience will be invaluable for tracking the tiny joints of preterm infants. We will collaborate with Profs Mary Rutherford and Jo Hajnal (King's College London) who will provide the cine MR scans of fetal movements, and Dr Owen Arthurs (UCL Great Ormond Street Institute of Child Health, London) who will provide post-mortem imaging data for segmentation of musculoskeletal morphologies. |
Collaborator Contribution | Clinical lead, Dr Chris Gale, Department of Medicine, is a Clinical Senior Lecturer in Neonatal Medicine and a Consultant Neonatologist at Chelsea and Westminster NHS Foundation Trust. His research interests include understanding how prematurity and early life nutrition influence health in later life and better applying evidence based practice to neonatal care. |
Impact | Applications in progress to EPSRC and Rosetree's Trust |
Start Year | 2016 |
Description | CONSORT Extension for Trials Conducted in Existing Data Structures |
Organisation | McGill University |
Country | Canada |
Sector | Academic/University |
PI Contribution | Methodological input relating to trials within electronic health record systems, collaborations, publicity, funding. |
Collaborator Contribution | Methodological input relating to trials within other existing data structures, collaborations, publicity, funding. |
Impact | No outputs to date; protocol under review; multidisciplinary including clinicians, methodologists and clinicla trialists. |
Start Year | 2017 |
Description | Cambridge Digital Health (CDH) collaboration for development of parent app prototype |
Organisation | Cambridge Digital Health Ltd |
Country | United Kingdom |
Sector | Private |
PI Contribution | Relayed research findings to this company who translated them into a usable parent information app prototype. Regular meetings conducted to this effect. |
Collaborator Contribution | CDH delivered a parent information app prototype using research findings from this award. |
Impact | Parent information app prototype (see relevant section entry) |
Start Year | 2020 |
Description | Collaboration with Manchester Farr HeRC |
Organisation | Farr Institute of Health Informatics Research |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Develop methodology to undertake a "point-of-care" trial using neonatal electronic patient data |
Collaborator Contribution | 1. Expertise in integrating clinical trial processes into an existing electronic health record system 2. Clinical trial set up, management, monitoring and audit |
Impact | 1. MRC Clinician Scientist Fellowship 2. The WHEAT Trial - a prospective, randomised, point-of-care trial |
Start Year | 2015 |
Description | Collaboration with Manchester Farr HeRC |
Organisation | University of Manchester |
Department | Manchester Academic Health Science Centre |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Develop methodology to undertake a "point-of-care" trial using neonatal electronic patient data |
Collaborator Contribution | 1. Expertise in integrating clinical trial processes into an existing electronic health record system 2. Clinical trial set up, management, monitoring and audit |
Impact | 1. MRC Clinician Scientist Fellowship 2. The WHEAT Trial - a prospective, randomised, point-of-care trial |
Start Year | 2015 |
Description | Delivering babies in or out of water: application to a NIHR HTA commissioned call |
Organisation | Cardiff University |
Department | South East Wales Trials Unit |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Developed the neonatal aspects of study design for a prospective observational study to examine the impact of birth in or out of water among low risk women. 2. Defined neonatal outcomes. 3. Developed methodology for obtaining neonatal outcomes from routinely collected data. Part of an application to the NIHR HTA, commissioned stream. |
Collaborator Contribution | 1. Conceived and led the development of the study 2. Developed maternal and midwifery components, including defining outcomes and determining methods for obtaining these from routinely collected maternity data sources and linkage to other data sources such as Hospital Episodes Statistics. 3. Patient and public involvement. |
Impact | NIHR HTA funding; this study is multidisciplinary and involves clinicians, midwives, patients and qualitative researchers |
Start Year | 2017 |
Description | Delivering babies in or out of water: application to a NIHR HTA commissioned call |
Organisation | University College London |
Department | Institute for Women's Health |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Developed the neonatal aspects of study design for a prospective observational study to examine the impact of birth in or out of water among low risk women. 2. Defined neonatal outcomes. 3. Developed methodology for obtaining neonatal outcomes from routinely collected data. Part of an application to the NIHR HTA, commissioned stream. |
Collaborator Contribution | 1. Conceived and led the development of the study 2. Developed maternal and midwifery components, including defining outcomes and determining methods for obtaining these from routinely collected maternity data sources and linkage to other data sources such as Hospital Episodes Statistics. 3. Patient and public involvement. |
Impact | NIHR HTA funding; this study is multidisciplinary and involves clinicians, midwives, patients and qualitative researchers |
Start Year | 2017 |
Description | Delivering babies in or out of water: application to a NIHR HTA commissioned call |
Organisation | University of Birmingham |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Developed the neonatal aspects of study design for a prospective observational study to examine the impact of birth in or out of water among low risk women. 2. Defined neonatal outcomes. 3. Developed methodology for obtaining neonatal outcomes from routinely collected data. Part of an application to the NIHR HTA, commissioned stream. |
Collaborator Contribution | 1. Conceived and led the development of the study 2. Developed maternal and midwifery components, including defining outcomes and determining methods for obtaining these from routinely collected maternity data sources and linkage to other data sources such as Hospital Episodes Statistics. 3. Patient and public involvement. |
Impact | NIHR HTA funding; this study is multidisciplinary and involves clinicians, midwives, patients and qualitative researchers |
Start Year | 2017 |
Description | Delivering babies in or out of water: application to a NIHR HTA commissioned call |
Organisation | University of Worcester |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Developed the neonatal aspects of study design for a prospective observational study to examine the impact of birth in or out of water among low risk women. 2. Defined neonatal outcomes. 3. Developed methodology for obtaining neonatal outcomes from routinely collected data. Part of an application to the NIHR HTA, commissioned stream. |
Collaborator Contribution | 1. Conceived and led the development of the study 2. Developed maternal and midwifery components, including defining outcomes and determining methods for obtaining these from routinely collected maternity data sources and linkage to other data sources such as Hospital Episodes Statistics. 3. Patient and public involvement. |
Impact | NIHR HTA funding; this study is multidisciplinary and involves clinicians, midwives, patients and qualitative researchers |
Start Year | 2017 |
Description | Developing Point-of-Care neonatal trials |
Organisation | Örebro University |
Country | Sweden |
Sector | Academic/University |
PI Contribution | Wider development and dissemination of point-of-care trial methodology developed at Orebro. |
Collaborator Contribution | Intellectual input towards development of point-of-care trials |
Impact | 1. Development of WHEAT randomised point-of-care trial 2. Input into the development of a European registry trial platform - initial meeting 23rd November 2015 |
Start Year | 2014 |
Description | NIHR Policy Research Unit in Maternal and Neonatal Health and Care |
Organisation | University of Oxford |
Department | National Perinatal Epidemiology Unit Oxford |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | I am a neonatal lead for this Policy Research Unit I established and am co Chief -Investigator for national surveillance of neonatal SARS-CoV-2, a NIHR Urgent Public Health Priority Research study developed and funded within the Policy Research Unit |
Collaborator Contribution | Co Chief -Investigator for national surveillance of neonatal SARS-CoV-2, project support with research associates and data capture, statistical support |
Impact | Publications: - The UK Obstetric Surveillance System SARS-CoV-2 Infection in Pregnancy Collaborative Group, Vousden N, Bunch K, Morris E, Simpson N, Gale C, O'Brien P, Quigley M, Brocklehurst P, Kurinczuk JJ, Knight M. The incidence, characteristics and outcomes of pregnant women hospitalized with symptomatic and asymptomatic SARS-CoV-2 infection in the UK from March to September 2020: a national cohort study using the UK Obstetric Surveillance System (UKOSS). In Press medRxiv https://doi.org/10.1101/2021.01.04.21249195 - Gale C, Quigley MA, Placzek A, Knight M, Ladhani S, Draper ES, Sharkey D, Doherty C, Mactier H, Kurinczuk JJ. Characteristics and outcomes of neonatal SARS-CoV-2 infection in the United Kingdom: a prospective national cohort study using active surveillance Lancet Child Adolesc Health. 2020 Nov 9:S2352-4642(20)30342-4 PMID: 33181124 - Knight M, Bunch K, Vousden N, Morris E, Simpson N, Gale C, O'Brien P, Quigley M, Brocklehurst P, Kurinczuk JJ, The UK Obstetric Surveillance System SARS-CoV-2 Infection in Pregnancy Collaborative Group. Characteristics and outcomes of pregnant women hospitalised with confirmed SARS-CoV-2 infection in the UK: a national population-based cohort study BMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m2107; Published 08 June 2020; PMID: 32513659 Grants: - Action Medical Research Project Grant GN2905: £151,287: Impact of SARS-CoV-2 exposure during pregnancy and the neonatal period on infants' neurodevelopment and social-emotional outcomes (SINEPOST) |
Start Year | 2020 |
Description | Optimising nutrition during therapeutic hypothermia: application to a NIHR HTA commissioned call |
Organisation | University of Nottingham |
Department | Faculty of Medicine & Health Sciences |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Lead applicant - conception, design and methodology 2. Extraction of outcomes from routinely collected neonatal data held within the National Neonatal Research Database (NNRD) |
Collaborator Contribution | 1. Parent involvement 2. Clinical input |
Impact | NIHR HTA funding; a protocol for publication. |
Start Year | 2016 |
Description | Promoting the uptake of core outcome sets |
Organisation | Center for Medical Technology Policy |
Country | United States |
Sector | Charity/Non Profit |
PI Contribution | Steering group member; methodological input in relation to trials using electronic health record systems and their use of core outcome sets, and as a core outcome set developer |
Collaborator Contribution | Organisational, collaborations, methodological. |
Impact | No outputs to date; multidiscipinary involving clinicians, clinical trialists, methodologists, industry, governement. |
Start Year | 2017 |
Description | The WHEAT Australia Trial |
Organisation | University of Sydney |
Department | NHMRC Clinical Trials Centre |
Country | Australia |
Sector | Academic/University |
PI Contribution | Conception of research idea, development or research question and novel clinical trial approach |
Collaborator Contribution | Application to Australian practice, wider collaboration with local clinicians |
Impact | No outputs yet |
Start Year | 2019 |
Description | The WHEAT International Trial: Canada and UK collaboration |
Organisation | Dalhousie University |
Country | Canada |
Sector | Academic/University |
PI Contribution | Developed the trial protocol for the first international randomised trial of preterm infants powered to detect a clinically important difference in necrotising enterocolitis: The WHEAT International Trial: WithHolding Enteral feeds Around red cell Transfusion to prevent necrotizing enterocolitis in preterm neonates: an international, multi-centre, randomized controlled trial. I am the UK Lead Investigator for this trial that will recruit ~2000 babies in the UK from 20 centres. |
Collaborator Contribution | Dalhousie University is the lead international site for this trial, and will aim to recruit ~2000 babies in Canada. |
Impact | No outputs yet except funding |
Start Year | 2021 |
Description | iHOPE: International Collaboration to Harmonise Outcomes for Pre-Eclampsia |
Organisation | University of Oxford |
Department | Nuffield Department of Primary Care Health Sciences |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | 1. Provision of neonatal input into the development of a perinatal core outcome set 2. Dissemination to paediatric and neonatal stakeholders |
Collaborator Contribution | Conception, design and development of a core outcome set for pre-eclampsia |
Impact | 1. Three peer reviewed publications and a published study protocol; 2. A core outcome set to be used in future pre-eclampsia trials; This study is multi-disciplinary involving clinicians, patients and qualitiative researchers. |
Start Year | 2016 |
Description | neoGASTRIC trial Australia |
Organisation | Monash University |
Country | Australia |
Sector | Academic/University |
PI Contribution | Developed a multicentre clinical trial to run in Australia and the UK - this will be the largest individually randomised neonatal clinical trial ever undertaken |
Collaborator Contribution | Led collaboration, led development of trial protocol, built collaborating team |
Impact | Multidisciplinary collaboration including: clinical academics, nurses, statisticians, health economists, parents |
Start Year | 2021 |
Title | PRIORITY cluster trial: Better information to improve the parent experience of neonatal care |
Description | The intervention is giving parents a daily update about their baby via an easy to use parent centred app. The data will come directly from routinely entered electronic clinical data. This intervention is being developed with NIHR CLAHRC North West London. |
Type | Health and Social Care Services |
Current Stage Of Development | Initial development |
Year Development Stage Completed | 2016 |
Development Status | Under active development/distribution |
Impact | Still in development |
Title | Withholding feeds during blood transfusion |
Description | This intervention is currently being tested in a pilot trial |
Type | Preventative Intervention - Nutrition and Chemoprevention |
Current Stage Of Development | Early clinical assessment |
Year Development Stage Completed | 2019 |
Development Status | Actively seeking support |
Clinical Trial? | Yes |
Impact | This pilot trial is testing and demonstrating the incorporation of all trial processes within an existing electronic patient record |
URL | https://www.npeu.ox.ac.uk/wheat |
Title | Parent information app (prototype) |
Description | As informed by this award's qualitative work with neonatal parents, I have created a prototype parent information app to contain daily neonatal clinical information (from the electronic patient record) in parent-designed language. |
Type Of Technology | Webtool/Application |
Year Produced | 2020 |
Impact | The next step is planning how to link the parent app to live NHS neonatal data (award dissemination)- certain challenges to overcome relating to new electronic record provider at Chelsea & Westminster hospital / COVID pandemic. |
Description | 'Opt-out consent and Platform trials' podcast with Prof Tony Gordon |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | PicPod podcast where features, challenges and advantages of opt-out consent and platform trials were discussed. |
Year(s) Of Engagement Activity | 2022 |
URL | https://picpod.net/ |
Description | Advisor for NEC Society USA |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | I am an advisor for the US based NEC Society Building Capacity for Patient Centered Outcomes Research/Comparative Effectiveness Research in the Neonatal NEC Community. This work involves ongoing engagement to develop an expert group of parents and patients to prioritise NEC research and to engage with policy makers and politicians. |
Year(s) Of Engagement Activity | 2020 |
URL | https://necsociety.org/2019/08/16/nec-society-receives-250000-research-capacity-award/ |
Description | Appearance on national television: BBC Breakfast |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | I spoke about neonatal research on BBC Breakfast (estimated audience 4 million) |
Year(s) Of Engagement Activity | 2017 |
URL | http://www.bbc.co.uk/programmes/b006v5tb |
Description | Blog posts Updating parents on neonatal units: "You can also log in to the app!" |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | Imperial Medicine blog, also publicised on social media, discussing greater parent involvement in neonatal care. |
Year(s) Of Engagement Activity | 2018 |
URL | https://wwwf.imperial.ac.uk/blog/imperial-medicine/ |
Description | Discussion of neonatal research (Family Integrated Care) on national television, BBC Victoria Derbyshire Programme |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | I discussed recently published neonatal research evaluating Family Integrated Care (greater involvement of parents in neonatal care and neonatal nursing activities) on the BBC 2 Victoria Derbyshire Programme. I was part of a small discussion panel that also included two parents of very preterm infants and we discussed the importance of research in neonatal care and of clinical trials in particular. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.youtube.com/watch?v=F6VsEMx_Omo |
Description | Involvement in the BUDS (Better Use of Data to improve parent Satisfaction) Project |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Through the use of a dedicated website, social media and blog posts we have engaged with parents and health professionals for the BUDS project. The aim of BUDS is to involve parents of babies requiring neonatal care in their baby's electronic data - with the twin aims of improving parent satisfaction and improving data quality. |
Year(s) Of Engagement Activity | 2016,2017 |
URL | http://neoepoch.com/parent-involvement/ |
Description | Involvement in the COIN (Core Outcomes In Neonatology) Project |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | We have involved over 250 stakeholders in the COIN project which aims to develop a core outcome set for neonatal research. This has involved newsletters, engagement events, social media, blogs and a public website. This wide involvement will ensure that the ensuing core outcome set is robust and representative, ensuring that it is widely accepted and utilised. |
Year(s) Of Engagement Activity | 2016,2017 |
URL | http://neoepoch.com/core-outcomes/ |
Description | Little Bliss magazine article regarding the BUDS project |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Supporters |
Results and Impact | I wrote an article detailing my project's progress for the "Little Bliss" magazine. This is a magazine published by the Bliss UK national neonatal charity (both online and in print) that includes "real stories" about dealing with life on a neonatal unit and advice by other parents and health care professionals. The purpose of this article was to promote my project and call for more ex-neonatal parent participants (parents whose babies are already discharged home). In the article, I included my project's research website and social media details for parents to contact me. As a result, a number of parents contacted me directly asking to participate. |
Year(s) Of Engagement Activity | 2017 |
URL | http://www.bliss.org.uk/little-bliss |
Description | Making a difference together: public involvement in health informatics research. Public lecture at Wellcome trust, Understanding Patient Data |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Supporters |
Results and Impact | Public lecture given as part of the Wellcome Trust Understanding Patient Data initiative. Involved parents and the national newborn charity Bliss. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.youtube.com/watch?v=rWHD13miiWM&feature=youtu.be |
Description | Parent involvement in the WHEAT trial |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | A member of the research group (parent representative) gave a talk to research nurses and academics about parent involvement in neonatal research. The talk stimulated discussion and questions. Increased awareness of importance of parents in neonatal research. |
Year(s) Of Engagement Activity | 2014 |
Description | Poster presentation of the BUDS project at the Chelsea and Westminster Research Audit and Service Improvement (RASI) event |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | I presented my project (BUDS) as a poster at the Chelsea and Westminster (C&W) Research Audit and Service Improvement (RASI) event. This annual event showcases all current projects at C&W, provides a platform for promoting teams and projects and an opportunity for teams to "share the learning" and/or collaborate. As a result of this presentation I met a co-presenting project team at C&W who were working on a similar project to mine. They had developed a patient mobile phone application to inform HIV patients about their treatment. We discussed certain IT barriers they had faced early on in their project and they advised me to speak with specific key people at C&W from the beginning of my project, to avoid facing the same issues. Following their recommendation, I had discussions with the "Innovation and Impact officer" at Chelsea, who in turn introduced me to the Care Information Exchange team at Chelsea. As a result I now have a better understanding of the key people that would be involved in integrating a digital communication tool into the existing IT system at C&W. This influenced my stakeholder engagement strategy and directed part of my plans towards engaging the C&W information integration analyst and digital information officer. |
Year(s) Of Engagement Activity | 2017 |
Description | Talk and workshop at the Bliss Baby Charter Conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Dr Susanna Sakonidou gave a talk and ran a workshop, with parent involvement, at the national conference for Bliss, the newborn charity. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.youtube.com/watch?v=rWHD13miiWM&feature=youtu.be |
Description | Wellcome trust presentation on the BUDS project for an Understanding Patient Data - themed event. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | I presented the BUDS project and my experience of involving parents in their baby's data at a Wellcome trust event, as part of the "Understanding Patient Data" theme. This group aims to support collaborations and better conversations about the uses of health information. My presentation was titled: "Making a difference together: public involvement in health informatics research". This included an overview of the neonatal database as well as how the BUDS project is engaging parents in all project stages. As a result of participating in this event, I was asked to provide a BUDS summary for inclusion in the "case studies" section of the Understanding Patient Data website. |
Year(s) Of Engagement Activity | 2017 |
URL | https://www.youtube.com/watch?v=rWHD13miiWM&feature=youtu.be |
Description | Worked with BBC on Casualty |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | I acted as medical advisor to BBC Casualty for an episode that involved a preterm baby that required neonatal care |
Year(s) Of Engagement Activity | 2021 |