Our Expert Working Groups
Expert Working Group 1 (EWG1) - Case Definitions
Chair: Mr Richard Wormald
The Case Definitions Expert Working Group (EWG) has carried out the work to review literature and identify the key criteria for defining degrees of visual impairment, eye disease and other key features for determining the data collected and the thresholds for categorisation and characterisation. The EWG have also advised on the equipment needed to gather data in the eye and hearing examinations.
Expert Working Group 2 (EWG2) - Public Health and Equity
Chair: Professor Darren Shickle
The Public Health and Equity EWG is responsible for advising the UKNEHS team on the requirements for study to provide maximum value from a public health perspective. This includes identifying the data needed to enable the effective investigation of specific public health questions, and supporting the team to identify and focus on the most important of those questions.
Expert Working Group 3 (EWG3) - Patient, Public and Stakeholder
Chair: Michael Bowen
The Patient, Public and Stakeholder EWG has advised the UKNEHS team from the very earliest stages of development of the study. It includes a wide range of patient and public representatives, as well as representatives from the UKNEHS's stakeholders. The group has provided valuable advice on the study's design and the detail of the data collection process from the perspectives of people living with sight and hearing loss, family members of people with such loss, and the wider sector. Their advice has been critical in shaping the study, and refining the planned methods for communicating with participants, facilitating involvement in the project and ensuring patient interests are kept at the heart of the project.
Expert Working Group 4 (EWG4) - Data linkage and reading centre
Chair: Professor Tunde Peto
The Data linkage and reading centre EWG advises the UKNEHS on the requirements for effective and efficient data collection, processing, management and governance. Ensuring that the UKNEHS has the technology and data infrastructure needed to allow field teams to collect accurate data and securely save that data to the central database at the reading centre is a central element in the UKNEHS plan. The reading centre at Belfast has extensive experience of receiving and managing large volumes of complex data and ensuring that they are securely stored and efficiently managed for research.
Expert Working Group 5 (EWG5) - Health Economics
Chair: Professor Alastair Gray
The Health Economics EWG brings extensive knowledge and experitse of health economics to the UKNEHS study. The UKNEHS will investigate the impact of current health spending in vision and hearing services, but also will seek to answer questions relating to the targeting of future spending, by exploring the impact of different models of service provision across the devolved nations and various regions of England.
Expert Working Group 6 (EWG6) - Epidemiology and Sampling
Chair: Dr. Tasanee Braithwaite, MA MPH MRCP FRCOphth DM
The Epidemiology and Sampling EWG has led the work within the UKNEHS team to develop the power calculations to inform the study's sample size, and working with Health Survey England, to develop the sampling strategy and methodology for the project. EWG 6 has undertaken a comprehensive review of the literature relating to population studies to collate and evaluate the efficacy of various approaches to such studies.
Members:
Mr Pearse Keane, MD FRCOphth
Pearse is a consultant ophthalmologist at Moorfields Eye Hospital, London and an NIHR Clinician Scientist, based at the Institute of Ophthalmology, University College London (UCL). Dr Keane specialises in applied ophthalmic research, with a particular interest in retinal imaging and artificial intelligence. He is originally from Ireland and received his medical degree from University College Dublin (UCD).
In January 2015, he was awarded a prestigious "Clinician Scientist” award from the National Institute of Health Research (NIHR) in the United Kingdom (UK) - the first ophthalmologist in the UK to receive such an award. His remit from this award is to explore the potential of new medical technologies and innovation in ophthalmology, ranging from advanced imaging to artificial intelligence to virtual and augmented realities.
In 2016, he initiated a formal collaboration between Moorfields Eye Hospital and Google DeepMind, with the aim of applying machine learning to automated diagnosis of optical coherence tomography (OCT) images. In September 2018, the first results of this collaboration were published in the journal, Nature Medicine. In 2018, he was listed on the “The Power List” by The Ophthalmologist magazine, a ranking of the Top 100 most influential people in the world of ophthalmology (https://theophthalmologist.com/power-list/2018).
In May 2019, Dr. Keane was awarded the Ludwig von Sallmann Award from the Association for Research in Vision and Ophthalmology (ARVO), a prestigious international award for clinician scientists under the age of 45.
Anne Conolly, BA MSc
Anne Conolly is a Research Director at the National Centre for Social Research (NatCen) where she specialises in population health surveys with particular expertise in bio-social data collection methods. She currently directs the Health Survey for England, an annual health examination survey that has monitors trends in the nation’s health and care. She has a BA in Social Sciences from Durham University and a MSc in Social Research Methods from the University of Surrey.
Professor Darren Shickle
Expert Working Group 7 (EWG7) - Genetics
Chair: Professor Chris Hammond
The Genetics EWG has advised the UKNEHS team on the feasibility and desirability of seeking to collect genetic data as part of the study. Currently the advice is that without specific additional funding for the collection, storage and analysis of genetic data, it would not be feasible to include this in the design.
"The NEHS is not going to have the statistical power to identify new genetic risk variants- but having population-based genetic data would allow us to assess, for example, whether genetic information (“polygenic risk score “) would improve our ability to predict who will get a disease like glaucoma, where at present there is no good screening test and we know many people affected are diagnosed late."
Expert Working Group 8 (EWG8) - Non-Ocular Specialties
Chair: Professor Sebastian Crutch
The Non-Ocular Specialties EWG includes experts from neurology, oncology, audiology, psychology and social research. The group was established to provide advice and guidance to the UKNEHS project in relation to opportunities to gather data relating to other conditions and factors associated with vision and hearing loss, and to ensure that such factors and features are taken into account in the analysis plan and reporting.
Expert Working Group 9 (EWG9) - International Scientific Advisory Group
Chair: Professor Hugh Taylor
The International Scientific Advisory Group was established in 2017, with their first meeting at the Association for Research in Vision and Ophthalmology conference in Baltimore. The purpose of the group is to advise the UKNEHS on all aspects of the design, development and delivery of the UKNEHS from the perspective of the experience of such projects internationally, and with a view to the ensuring that the UKNEHS makes a genuine and impact contribution to the global evidence base for vision and hearing. The group includes subject experts from around the world, with extensive experience in epidemiology, population health, and international data sets.