Consortium

University College Dublin, Ireland
School of Sociology

The UCD team is based in the School of Sociology. It is Ireland’s leading centre for education and research in sociology. The School has an international research reputation and strong research links with multiple academic schools in related disciplines within UCD and external to the University. The School´s staff, post-doctoral and PhD researchers have numerous research interests from historical, comparative and quantitative research to social complexity and arising changes in modern world. Currently, research activities address issues of health and illness, health inequality, new technologies, cybernetics, human rights and global inequalities, social network analyses, the media, migration and diversity, national identity, criminology, globalization and more.

Researchers:

  • Shane O’Donnell is a postdoctoral researcher at the School of Sociology, UCD and coordinator of OPEN. His expertise lies at the intersection of several disciplines including sociology, connected health and the lived experience of chronic disease.  He has lived with type 1 diabetes for more than 15 years.

  

  • Tahar Kechadi, Professor of Computer Science at the Insight Centre for Data Analytics, UCD. His research interests span the areas of Data Mining, distributed data mining economics, heterogeneous distributed systems, Grid and Cloud Computing, and digital forensics and cyber-crime investigations.

  

  • Gerardine Doyle, Professor of Accounting and Taxation at University College Dublin, is Director of the UCD Michael Smurfit Graduate Business School. Gerardine is Associate Dean of the UCD College of Business. Her research interests include health literacy, value measurement for healthcare and the nexus between tax and health policy. A key motivation of Gerardine’s research agenda is to deliver societal impact by engaging in societal-challenge orientated research to influence national and international policy with special emphasis on health, tax and education policy.

  

Charité – Universitätsmedizin Berlin, Germany
Department of Paediatric Endocrinology and Diabetes

Charité – Universitätsmedizin Berlin is one of the largest European university hospitals. Clinical care, research and teaching is delivered by physicians and researchers of the highest international standard. CUB proudly lays claim to more than half of all German Nobel Prize winners in Physiology or Medicine, including Emil von Behring, Robert Koch, and Paul Ehrlich. La CUB is internationally renowned for its excellence in teaching and training. CUB represents a single medical faculty, which serves both Humboldt-Universität zu Berlin and Freie Universität Berlin. Innovative capacity and responsible governance, for the benefit of patients and society – these are the central tenets behind all of Charité research endeavours. Approximately 3,700 researchers are actively engaged in the development of pioneering innovations in the field of medicine. Committed to the highest standards of quality and sustainability, they work across 1,000 projects, working groups and collaborative projects. There is a particular focus on the interface between basic and patient-oriented research, which seeks to foster interdisciplinary collaborations with both national and international partners. Harnessing the potential of this approach is of particular importance to Charité given that the most significant scientific developments are likely to arise from interdisciplinary cooperation. While committed to both national and international research, and growing its reputation on both the national and international stage, Charité remains true to its roots. Charité is very much the heart of Berlin-based health care research as well as its driving force. Developed in cooperation with the Max Delbrück Center for Molecular Medicine (MDC), the Berlin Institute of Health (BIH) continues to expand, offering a systems medicine approach that is unique in Germany.

Researchers:

  • Katarina Braune is a Medical Doctor and post-doctoral researcher, focusing on the digital transformation of diabetes care. She is co-chair of the non-for-profit organization Hacking Health Berlin and Advisory Board member of the Diabetes and Technology task force of the German Diabetes Society and leading companies in the diabetes industry. Living with type 1 diabetes herself since childhood age, she empowers others as a global advocate and spokesperson in diabetes (e.g. as a Young Leader in Diabetes of the International Diabetes Federation, invited speaker at the World Diabetes Conference, Frontiers Health and TEDx).

  

  • Klemens Raile is professor in Paediatrics and head of the department. He is specialized in Paediatric Endocrinology and Diabetes and his research focus ranges from care and treatment of children type 1 diabetes and prevention of any diabetic complications to investigating new, molecular mechanisms in rare diabetes phenotypes, among those syndromal diabetes, familial diabetes and childhood-onset type 2 diabetes.

  

Steno Diabetes Center, Copenhagen, Denmark

Steno Diabetes Center Copenhagen (SDCC) is the largest diabetes clinic in Scandinavia and treats each year more than 9000 people with diabetes from the Capital Region. SDCC is a hospital specialised in patient care, research, and prevention of diabetes and in the education of healthcare professionals within diabetes. SDCC is one of few centers globally that focus on diabetes only and has research, education and health promotion closely connected to the clinical care of patients. From the earliest stages of risk for diabetes to patients with longstanding diabetes and development of complications, the Center ensures that research results are directly implemented to improve patient care and management as well as targeting new approaches to disease prevention.

Researchers:

  • Bryan Cleal is a Senior Researcher at Steno Diabetes Center Copenhagen, where he has worked for the last 8 years. Trained in social anthropology, his primary research interests relate to the social and behavioural aspects of both type 1 and type 2 diabetes; animated in the case of DIYAPS with a focus on the influence of emerging technologies and their impact on traditional roles in healthcare and health communication.

  

  • Ingrid Willaing Tapager is a researcher specialised in health services, including health technology assessments, studies of health care professionals, patients and persons at risk of chronic illness.

  

  • Timothy Skinner is Professor of Psychology at the University of Copenhagen.  His research focuses on understanding how best to help people with diabetes managing the dual demands of managing their diabetes and optimising their emotional well-being.  He works with the Diabetes Management Group of the Steno Diabetes Centre, to understand how we can provide tools and programs for health care professionals, to support people with diabetes.

 

Dedoc Labs, Berlin, Germany

Dedoc labs is the company behind #dedoc°, Europe’s largest network of independent patient advocates in the diabetes sphere. #dedoc° connects members of the diabetes community through a common platform, dedicated social media channels, community events and a shared vision for the patient voice.

Researchers:

  • Bastian Hauck is a professional sailor, author, entrepreneur – and person with type 1 diabetes. He is the founder of the #dedoc° Diabetes Online Community, CEO of dedoc labs and member of the board of DiabetesDE – German Diabetes Aid, where he is responsible for patient engagement and advocacy. He is also a director at the International Diabetes Federation Europe. As public speaker and diabetes advocate, Bastian Hauck promotes taking the patient voice seriously. He works as a consultant on patient centered communication and digital health solutions.

  

OpenAPS

The Open Artificial Pancreas System project (#OpenAPS) is an open and transparent effort to make safe and effective basic Artificial Pancreas System technology widely available to more quickly improve and save as many lives as possible and reduce the burden of type 1 diabetes.

Researchers:

  • Dana Lewis is the founder and a developer of OpenAPS. After first building her own DIY “artificial pancreas,” Dana helped found the open source artificial pancreas movement, aiming to make safe and effective artificial pancreas technology available (sooner) for people with diabetes around the world. She is also a Principal Investigator for a Robert Wood Johnson Foundation funded grant project called “Opening Pathways” to work to scale patient-led innovation and scientific discovery in more patient communities.

AndroidAPS

AndroidAPS is a free and open source research tool-kit with which patients can build their own closed loop artificial pancreas system controlling a Sooil Dana R/RS, a Accu-Chek Spirit Combo or a Accu-Chek Insight insulin pump.

Researchers:

  • Adrian Tappe is a computer scientist and very involved in the voluntary development of open source apps and tools that help people with type 1 diabetes. He was diagnosed with type 1 in 2004. His engagement in the #WeAreNotWaiting community began in 2014 when he joined the Nightscout and xDrip development team to help parents, caregivers and patients make better use of their CGM systems including remote monitoring and integration into everyday electronic devices breaking the barrier of medical devices and the reality patients live in. He is now one of the main developers of AndroidAPS.

University of Copenhagen, Denmark

The University of Copenhagen (UCPH), the oldest one in Denmark, is highly ranked among the world’s best universities. The university provides an international research and study environment for approximately 5000 researchers and 37500 students, where they have the chance to develop their talents for contributing to solutions for the challenges and needs of society. Nine Nobel Prizes have been awarded to researchers at the university.
The research activities focus on free basic research, but the University of Copenhagen also encourages inter-organisational cooperation and interdisciplinary initiatives, maintains close contact with the business community and helps students find programmes and projects in the field of sustainability.
More than 200 research centres and the diversity of scientific approaches are distinguishing feature and strength of the University. Together, the Faculty of Health and Medical Science and the Faculty of Science are one of the largest Health and Life Sciences centres in Northern Europe.
The Centre for Medical Science and Technology Studies is part of the Department of Public Health which itself is part of the Faculty of Health and Medical Science. The aim of the Centre is to support research that looks at medical and health-related topics from the perspective of science and technology studies.

Researchers:

  • Henriette Langstrup is associate professor of Science and Technology Studies at Center for Medical and Technology Studies, Department of Public Health, University of Copenhagen, where she is also the head of studies in Health Informatics. Her main area of research is Health-it and User Practices with a special emphasis on qualitative and ethnographic explorations of the social and organizational implication of innovative technologies in the area of chronic care management. In particular, she studies the implication of the increased involvement of patients in their own care made possible through digital innovation such as DIY APS. She has a background in psychology and organization studies.

  • Jasmine Schipp is a PhD Candidate based at the Australian Centre for Behavioural Research in Diabetes. Jasmine is enrolled in a joint program between Deakin University and the University of Copenhagen. Her thesis is on people with type 1 diabetes who are using “do-it-yourself” technologies (AndroidAPS, OpenAPS and Loop) to manage their diabetes. She has a Bachelor of Science with first class Honours in Psychology from the University of Melbourne (2016). Jasmine has a strong interest in the field of Health Psychology, and has previously worked on research projects focused on the mental health and quality of life of people with traumatic brain injuries and epilepsy.

The Australian Centre for Behavioural Research in Diabetes, Melbourne, Australia

The Australian Centre for Behavioural Research in Diabetes (ACBRD) is a partnership between Diabetes Victoria and Deakin University. The ACBRD is the first research centre for the investigation of psychological, behavioural und social aspects of diabetes. The Centre aims to be a national resource for clinicians, researchers and policy makers. It wants to raise awareness and influence policy and practice at local and national levels. The ACBRD focuses on improving the quality of life of Australian people with diabetes and their families with research that includes social stigma surrounding diabetes, emotional well-being, self-management education and peer support, experiences of new treatments, insulin delivery and monitoring technologies, the role of beliefs, attitudes and emotions in diabetes outcomes and more.

Researchers:

  • Jane Speight, PhD in Health Psychology, is the founding director of the Australian Centre for Behavioural Research in Diabetes and holds the Chair of Behavioural and Social Research in Diabetes at Deakin University. In 2011, Jane led the development of Diabetes Australia’s position paper, ‘A new language for diabetes’, which has become an international movement to promote and lead to a more sensitive choice of words in communicating with or about people with diabetes. Jane’s main research interests focus on improving the quality of life of people with diabetes and optimising their self-sufficiency. Her research includes, but is not limited to, expectations, experiences and optimization of new diabetes treatments and technologies. Jane is widely recognized as an authority in the development, application and interpretation of measurements of psychological processes and outcomes in diabetes, also known as Patient Reported Outcomes.

  • Christel Hendrieckx, PhD in Psychology, is the inaugural Deputy Director of the ACBRD and a Senior Research Fellow at Deakin University. Throughout her career, she has been involved in the clinical care of people with diabetes as well as in research. Before she became part of the ACBRD, she coordinated international research programs on novel treatments for type-1 diabetes. She is training health professionals in matters of emotional aspects of living with diabetes. Her research interests span the psychological antecedents and consequences of hypoglycaemia and the perceptions of PwD of novel treatments and technologies.