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: Dept of Medicine

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.

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.

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.

Publications

10 25 50

publication icon
Dos Santos F (2018) Development of a core outcome set for trials on induction of labour: an international multistakeholder Delphi study. in BJOG : an international journal of obstetrics and gynaecology

publication icon
Duffy J (2017) Core outcome sets in women's and newborn health: a systematic review. in BJOG : an international journal of obstetrics and gynaecology

publication icon
Duffy J (2017) Outcome reporting across randomised controlled trials evaluating therapeutic interventions for pre-eclampsia. in BJOG : an international journal of obstetrics and gynaecology

publication icon
Duffy JMN (2017) A systematic review of primary outcomes and outcome measure reporting in randomized trials evaluating treatments for pre-eclampsia. in International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics

publication icon
Gale C (2016) The United Kingdom National Neonatal Research Database: using neonatal data for research, quality improvement and more in Archive of Diseases in Children Education and Practice Edition

publication icon
Gale C (2017) Research ethics committee decision-making in relation to an efficient neonatal trial. in Archives of disease in childhood. Fetal and neonatal edition

 
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 Participation in a national consultation
URL https://www.gov.uk/government/news/new-ambition-to-halve-rate-of-stillbirths-and-infant-deaths
 
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 04/2018 
End 04/2020
 
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 Optimising newborn nutrition during therapeutic hypothermia: an observational study using routinely collected data
Amount £92,988 (GBP)
Funding ID 16/79/03 
Organisation National Institute for Health Research 
Department Health Technology Assessment Programme (HTA)
Sector Public
Country United Kingdom
Start 10/2017 
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 10/2016 
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 Hospitals
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 04/2018 
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 09/2017 
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 Academic/University
Country United Kingdom
Start 09/2017 
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
 
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 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 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
 
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 Public 
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 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 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 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
 
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 
 
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 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 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