STANDOUT: STANdardisation of respiratory Definitions and OUTcomes using Real World Data

Europe has some of the richest real-world data (RWD) sources in the world. The use of these data is increasingly commonplace, not only in everyday clinical practice, as more and more systems are automated, but also in answering research questions, understanding disease trends, tackling inequalities for regulatory purposes and informing policy and resource allocation. However, the use of these data is not standardised. This, in turn, may reduce trust in their use.

To allow more accurate comparisons and contextualisation, central to the use of these data is agreement on disease, outcome and covariate definitions through, for example, standardisation of codelists and algorithms. This standardisation is also essential to make optimal use of source data mapped to a common data model (CDM). This is highly relevant, as the use of a CDM will:

  • Facilitate the use of data sources from different clinical and scientific populations/cohorts for advanced statistical analysis
  • Ensure results are generalisable to different populations (allowing for patient variation within databases)
  • Help to future-proof the use of clinical databases for scientific research.

Therefore, the main objectives are:

  • Establish definitions and standards for respiratory diseases for use in European RWD sources
  • To monitor and improve the mapping of source data to CDMs suitable for research on respiratory diseases
  • To create collaborations across broader stakeholders to ensure that our work is of use to and implemented by others
  • To obtain external funding to allow further generation and optimisation of RWD.

STANDOUT has received funding for project management support from AstraZeneca.

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How to get involved

To learn more about how to get involved with STANDOUT, please contact Anna at anna.mroz@imperial.ac.uk

Projects
  • COPD validation SLR

–https://pmc.ncbi.nlm.nih.gov/articles/PMC8435805/

  • COPD exacerbation validation SLR

–https://journal.copdfoundation.org/Portals/0/JCOPDF/InPress/JCOPDF-2024-0577-InPress.pdf

  • Asthma validation

– https://www.dovepress.com/validation-of-asthma-recording-in-electronic-health-records-a-systemat-peer-reviewed-fulltext-article-CLEP

STANDOUT team

  • Jenni Quint

    Personal details

    Jenni Quint

    Affiliations

    Jenni is leading STANDOUT, she   is a Professor of Respiratory Epidemiology in the School of Public Health at Imperial College London.

  • Aparna Balasubramanian

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    Aparna Balasubramanian

    Affiliations

    Aparna Balasubramanian, MD MHS is an Assistant Professor of Medicine and Medical Director of the Pulmonary Function Testing Laboratory at Johns Hopkins University. She is a pulmonologist and conducts clinical research on COPD, pulmonary vascular disease, and pulmonary function testing with an interest in epidemiologic research leveraging electronic health record data. She is the analytic lead for the Johns Hopkins COPD and Asthma Precision Medicine Centers of Excellence, where she develops and guides studies using clinical data repositories to define high-risk subgroups, evaluate novel treatable traits, and assess therapeutic interventions. She is also a member of the Pulmonary Vascular Research Institute GoDeep Meta-registry Steering Committee, a worldwide consortium of pulmonary hypertension registries focused on epidemiologic research in all forms of pulmonary hypertension.

  • Chad Hochberg

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    Chad Hochberg

    Affiliations

    Dr. Chad H. Hochberg is an Assistant Professor in the Division of Pulmonary and Critical Care Medicine at Johns Hopkins University in Baltimore, MD, USA. Dr. Hochberg earned his M.D. at the University of Chicago, after which he came to Johns Hopkins and completed an internal medicine residency and fellowship in Pulmonary and Critical Care Medicine. During this time, Dr. Hochberg served as an Assistant Chief of Service for the Osler Training program and earned a Master's in Clinical Research from the Johns Hopkins Bloomberg School of Public Health. As a clinician scientist, Dr. Hochberg has an active practice as an intensivist and connects this clinical experience with a research agenda that uses health informatics to understand and inform evidence-based critical care practice adoption, optimisation, and sustainment in patients suffering from critical illness. Recent projects have included involvement in the recently developed common data model for acute illness, the Common Longitudinal ICU data Format (CLIF), where he currently serves as the Vice Chair for New Member Engagement.

  • Gavin Jamie

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    Gavin Jamie

    Affiliations

    Gavin is a GP working as a Clinical Researcher in the Clinical Informatics and Health Outcomes Research Group at Oxford University, which incorporates the RCGP Research and Surveillance Centre. His principal role is the curation and maintenance of code lists and phenotypes  for the extraction of information from routinely collected primary health care data. He has an interest in SNOMED CT and the use of data to measure quality in General Practice, and he has written an introductory guide to SNOMED CT for clinicians and practice staff. He has been an NHS GP in Swindon for over 20 years and has an MSc in Healthcare Informatics from the University of Bath in conjunction with the Royal College of Surgeons of Edinburgh.

     

  • Holly Tibble

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    Holly Tibble

    Affiliations

    Holly is a Chancellor's Fellow at the University of Edinburgh's Usher Institute. Her primary research interest is how Electronic Health Records can be leveraged to improve routine asthma management, including risk prediction and adherence monitoring. 

  • Janwillem Kocks

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    Janwillem Kocks

    Affiliations

    Janwillem is a practising General Practitioner, Professor of Inhalation Medicine at the Observational and Pragmatic Research Institute in Singapore, and Managing Director of the General Practitioners Research Institute.  He obtained his medical degree in 2004 at the University of Groningen. In January 2005, he started his PhD research at the Groningen Research Institute on Asthma and COPD (GRIAC), resulting in his thesis “Towards Health Status Guided Care in COPD”. He combined his PhD training with specialist training for general practitioners, graduating as a general practitioner in March 2009 and obtaining his PhD in June 2011. He visited the Medical Research Institute of New Zealand (headed by Professor Richard Beasley) between July 2013 and February 2014 as a senior research fellow and was a visiting professor at the Observational & Pragmatic Research Institute (headed by Professor David Price) at the end of 2017. He is a member of the board of directors of the International Primary Care Respiratory Group (IPCRG) and the past president. His current research focuses on the early diagnosis and individualised management of both asthma and COPD in primary care, including the improvement of inhalation techniques through education and the use of smart inhalers.

  • Job FM van Boven

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    Job FM van Boven

    Affiliations

    Job leads the multidisciplinary research group on cost-effective respiratory drug use at the Department of Clinical Pharmacy and Pharmacology of the University Medical Center Groningen (The Netherlands) and serves as the Principal Investigator at the Groningen Research Institute for Asthma and COPD (GRIAC). He is the founding director of the Medication Adherence Expertise Center of the Northern Netherlands (MAECON), led the 40-country European Commission-funded COST Action on Medication Adherence Technology (ENABLE) and co-chairs the European Respiratory Society’s working group on digital respiratory health “CONNECT”. His work aims to maximise the clinical and economic benefits of respiratory medication. It includes both observational real-world database studies and the development and trials of innovative digital and personalised solutions to support respiratory drug use, such as digital inhalers, spacers, and electronic pill bottles. He is the co-author of over 200 scientific publications, has supervised 15 PhD students, and has received several research prizes and grants.

  • Kjell Erik Julius Håkansson

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    Kjell Erik Julius Håkansson

    Affiliations

    Kjell is a pulmonologist fellow at Copenhagen University Hospital and a postdoc at the Danish Severe Asthma Registry. His research focuses on the use of Danish nationwide databases, utilising the concept of “Denmark as a research cohort” to investigate the real-world access to and efficacy of biological therapies for severe asthma. Kjell has a strong interest in the socioeconomic perspective of airway disease and strategies to mitigate both individual and societal-level impact of poorly controlled disease. His research has been featured in leading journals and has received both national and international recognition. He participates in several international research consortia aimed at increasing awareness and improving care for patients with airway disease. He is a member of the Danish Pulmonologist Society’s national treatment guideline committee for asthma.

  • Lies Lahousse

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    Lies Lahousse

    Affiliations

    Lies is an Associate Professor at the Department of Bioanalysis, Faculty of Pharmaceutical Sciences, Ghent University (Belgium), and at the Department of Epidemiology, Erasmus Medical Center (the Netherlands). She is trained as a pharmacist (Master of Pharmaceutical Care at Ghent University) and an epidemiologist (Master of Science in Health Sciences: Clinical Epidemiology, Erasmus University Rotterdam, the Netherlands). She completed her PhD in Respiratory Medicine, jointly awarded by the Universities of Rotterdam and Ghent. She provides research-driven academic education to pharmacists and MD’s in training. Her research focuses on therapy adherence and precision medicine, including optimising the benefit-risk ratio of approved drugs by studying heterogeneity among phenotypes, endotypes, and underlying genetics, with the ultimate goal of improving care for patients with chronic, complex diseases, such as asthma and COPD.

  • Lowie Vanfleteren

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    Lowie Vanfleteren

    Affiliations

    Lowie Vanfleteren, MD, PhD, is a respiratory physician at the COPD-Centre of Sahlgrenska University hospital, which focuses on novel patient-centred and multi- and interdisciplinary treatment of patients with COPD and COPD-related research. He is an associate professor at the University of Gothenburg (GU) with a special focus on COPD. He is part of the management committee of the Swedish National Airway Registry (SNAR) and is responsible for the COPD cohort for the SNAR research group. 

  • Manon Belhassen

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    Manon Belhassen

    Affiliations

    Manon is a pharmacoepidemiologist specialising in real-world data analysis and drug safety. As the head of PELyon, she leads research that leverages large healthcare databases to assess treatment effectiveness and safety. She has extensive experience handling national claims data, electronic health records, and disease registries, applying advanced epidemiological methods to generate real-world evidence. An accomplished researcher, Manon has authored numerous peer-reviewed publications in leading journals. Her work provides insights into medication risks, treatment patterns, and healthcare utilisation, informing regulatory decisions and clinical practice. She actively contributes to scientific networks and presents her findings at international conferences. Committed to methodological innovation, Manon bridges the gap between data science and clinical research to enhance patient care and public health. She also mentors early-career scientists, helping to foster the next generation of pharmacoepidemiologists.

  • Marc Miravitlles

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    Marc Miravitlles

    Affiliations

    Marc, MD, FERS, is a senior researcher and consultant in the Pneumology Department at Vall d’Hebron University Hospital and Vall d’Hebron Research Institute in Barcelona, Spain. He has served as chair of the Respiratory Infections Group of the European Respiratory Society (ERS) and guidelines director of the ERS. He has also acted as a consultant for the development of international guidelines for chronic obstructive pulmonary disease (COPD), including the American Thoracic Society (ATS)/ERS guidelines on exacerbations of COPD and the ERS statement on the management of respiratory disease in alpha-1 antitrypsin deficiency. He is currently a consultant to the Spanish Ministry of Health for the development of the National Strategy Against COPD and the vice president of the ERS (2024-2025). In addition, he has served as the coordinator of the Spanish National Guidelines for COPD since 2011. Dr Miravitlles is the author or co-author of more than 650 peer-reviewed publications in the fields of COPD and alpha-1 antitrypsin deficiency.

  • Mathias Therkelsen King

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    Mathias Therkelsen King

    Affiliations

    Mathias is a medical doctor and PhD student at Respiratory Research Aalborg (REAAL) at Aalborg University Hospital and Danish Center for Health Services Research (DACS) at Aalborg University. He obtained his medical degree from Aalborg University, with a background in clinical practice at the Department of Respiratory Diseases and the Department of Anesthesiology and Intensive Care at Aalborg University Hospital. His research journey began with a focus on risk factors for Chronic Obstructive Pulmonary Disease (COPD) and lung function decline. Currently, he is working with data from the Danish national registries to explore respiratory epidemiology, with a specific focus on sex differences in prognosis after COPD exacerbations.

  • Sanja Stanojevic

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    Sanja Stanojevic

    Affiliations

    Sanja, PhD, is an Associate Professor in the Department of Community Health and Epidemiology at Dalhousie University in Canada

  • Simon de Lusignan

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    Simon de Lusignan

    Affiliations

    Simon is a Professor of Primary Care and Clinical Informatics at the Department of Primary Health Care, University of Oxford, and Director of the Royal College of General Practitioners Research and Surveillance Centre. He also serves as a Fellow of the Governing Body at Green Templeton College, Oxford. His primary academic ambition is to enhance the use of routine data to improve health and medical care. He is actively transforming the Oxford-based RCGP Research and Surveillance Centre (RCGP RSC) into a leading network for health data research. His work focuses on leveraging real-world evidence and integrating technology into clinical workflows, including the evaluation of telemedicine and the use of computers during consultations. In his role as Director of the RCGP RSC, England's primary care network for infectious disease and COVID-19 surveillance, he has overseen its evolution into the Oxford-RCGP Clinical Informatics Digital Hub (ORCHID), which serves as a trusted environment for conducting diverse and impactful research projects.

  • Ulla Møller

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    Ulla Møller

    Affiliations

    Ulla Møller is a professor of respiratory medicine at Aalborg University and a senior consultant at Aalborg University Hospital, Denmark. Her research focuses on COPD, and her research group focuses on using “Denmark as a research cohort” through access to the Danish nationwide databases. Ulla focuses on predictors of outcome in COPD, with a special interest in comorbidities, sex- and social differences in COPD.  Ulla is the chair of the Danish Respiratory Society and works for political recognition of respiratory diseases in a national setting, as well as increasing awareness and improving care for patients with airway diseases in society in general. She participates in international research collaborations about COPD.

  • Vidya Navaratnam

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    Vidya Navaratnam

    Affiliations

    Vidya  is a respiratory physician with an interest in interstitial lung disease (ILD)/pulmonary fibrosis based in Western Australia. Her research interests focus on utilising routinely collected health data to investigate the epidemiology and management of individuals with ILD.