Data-enabled Society for Health: Challenges and Opportunities

Recent years have seen dramatic advances of the use of big data in healthcare. Whilst the role of data - undoubtedly the most important commodity of 21st century - for health innovation and personalised treatment is indisputable, there is an urgent need to develop an ethically and operationally interoperable regulatory framework at both national and international level, with strategies that lead towards citizen-centric, ethical and fair healthcare data use, which benefits individuals, and in particular the most vulnerable members of society.

The thematic areas include concerns about "data extraction" model of surveillance capitalism; data ownership, regulation and control, privacy and security. This trend has been accelerated by the COVID-19 pandemics enabling access to public health by Big Tech players; normalisation of ubiquitous surveillance, and limitations of equity in global health.

The workshop, which is supported by the UCL IRDR Centre for Digital Public Health in Emergencies, and the UCL Institute for Global Health, will explore questions such as:

• Who should own healthcare data?

• How do we protect privacy?

• How can consistency in regulations be enabled at a national and international level?

• What are the challenges and opportunities from a global perspectives?

• What are the universal challenges and opportunities for research?

• How can we globally address equality and equity of access to the opportunities of data enabled society for health?

Agenda

14:00 - 14:30: Registration

14:30 - 14:40: Welcome from Rebecca Shipley

14:40 – 14.45: Opening talk from Patty Kostkova

14.45 - 15.25: Introductions to panellists by Anna Cupani, with panellists covering the following themes:

• Trust and Governance
• Identifying and understanding needs
• Challenges & Opportunities, examples from a UK context
• Challenges & Opportunities, examples from a global context
• ‘Data Culture’ ?

15:30 - 16:00: Panel discussions and audience questions

16:00 - 16:30: Break

16:30 - 17:15: Breakout discussions

Group 1: Ownership and Control

Who should own healthcare data? How do we protect privacy? How can we globally address equality and equity of access to the opportunities of data-enabled society for health? Is it possible to reclaim data from Big Tech for public good?

Group 2: Regulations, Standards and Protection

How can consistency in regulations be enabled at a national and international level? What are the challenges and opportunities from a global perspective? Are universal standards and best practices ever possible? Could they protect the most vulnerable?

Group 3: Ethics, Culture, Access and Expectations

What do we need to shape international relationships that enable ethical, cultural and operational interoperable of data access and its regulations? How can we address legal challenges of data access? How do we identify and prioritise ‘needs’? What is the role of universities, industry and policy makers?

17:15 - 17:30: Feedback from groups

17:30 - 19.00: Closing remarks and drinks reception

Speakers & Chairs

Rebecca Shipley

Becky Shipley is Professor of Healthcare Engineering in UCL Mechanical Engineering, Director of the UCL Institute of Healthcare Engineering and Vice Dean (Health) within the UCL Faculty of Engineering Sciences. She did her Undergraduate studies, DPhil (PhD) and Junior Research Fellowship in applied mathematics at the University of Oxford before joining UCL in 2012 as a Lecturer in Biomedical Engineering (promoted to Professor in 2019). During COVID-19, Becky co-led the UCL-Ventura CPAP programme with colleagues in engineering and medical sciences across UCL and UCL Hospitals, delivering non-invasive breathing aids to the NHS and globally. The team was awarded the Royal Academy of Engineering President's Special Awards for Pandemic Service (2020), the Health Service Journal Awards 2020 Acute Sector Innovation of the Year, the Alex Moulton Award (2021) from the Institution of Engineering Designers, and Becky was awarded an OBE in the Queen's Birthday Honours 2021.

Patty Kostkova

Patty is Professor in Digital Health and the Director of UCL Centre for Digital Public Health in Emergencies (dPHE). She was a consultant at WHO, ECDC, Sky, Telefonica. Her research investigates mobile surveillance in Brazil, maternal health in Nepal and antibiotic stewardship in Nigeria and the NHS. During COVID-19, she lead an award winning project My Lockdown Journal. In 2019 and 2020, Patty won the 'Innovator of the Year' Award by Computing Women in IT Excellence Awards and the prestigious Coronaprofile by Business Science, while her team won the Team of the Year 2020 Award by Computing Rising Stars Awards. Patty published over 230 peer-reviewed papers, and is the Editor in chief of Frontiers in Digital Public Health, and General and Scientific Chair of International Public Health Conference since 2009.

Anna Cupani

James Wilson

James Wilson is Professor of Philosophy at UCL, where he is also Co-Director of the Health Humanities Centre. He has published widely on public health ethics, the philosophy of public policy, and on the ownership and governance of ideas and information. His research uses philosophy to help resolve practical problems, and uses practical problems to investigate gaps and weaknesses in existing philosophical theories. His book Philosophy for Public Health and Public Policy: Beyond the Neglectful State was published in 2021 by Oxford University Press. He provides ethics advice to a range of public sector organisations in the UK, including as a member of the National Data Guardian’s Panel. He is an Associate Editor at the journal MIND.

Neo Mapitse

Neo Mapitse is a veterinarian and a Manager at the World Organisation for Animal Health (WOAH) in Paris, France. Neo has worked in various roles of the Organisation as a Sub Regional Representative, the Organisation`s technical Departments, receiving disease data and notifications of Members. Other responsibilities included analysis of the data to provide information for decision making in animal health for users of WAHIS. Neo has managed a team responsible to support the assessment of Members’ dossiers in the process of official diseases free status recognition including capacity building on the relevant standards and the use of data to support the objective of WOAH Observatory.

Anneke Schmider

Dr Anneke Schmider is an Associate Fellow at Chatham House. Her focus is the use of research, evidence and innovation for global health policy, with specific focus on investing in health as an asset for resilient economies and societies. She is currently supporting the Commission for Universal Health at Chatham House. Dr Schmider has delivered a wide range of data, research and evidence for Australian health policy and has advised on government investments in health science, technology, and innovation. She has also contributed to new global health strategies and financing initiatives, working for the World Health Organization, World Bank, and University of Oxford Big Data Institute.

Stefan Elbe

Stefan Elbe is Professor of International Relations and Director of the Centre for Global Health Policy at the University of Sussex. He has published widely on the international politics of health including Pandemics, Pills and Politics: Governing Global Health Security (JHUP) Security and Global Health: Towards the Medicalization of Insecurity (Polity Press), Virus Alert: Security, Governmentality and the AIDS Pandemic (Columbia University Press) and Strategic Implications of HIV/AIDS (Oxford University Press). Professor Elbe has served as the Head of the International Relations Department and as Director of Research for the School of Global Studies at the University of Sussex. He also served as the founding Chair of the Global Health Section of the International Studies Association, and as founding Co-Convener of the Global Health Working Group of the British International Studies Association.

Stephen Roberts

Dr Stephen Roberts is a critical global health security scholar, and Lecturer in Global Health at the Institute for Global Health. His research focuses on the datafication and digitisation of global health security practices (which includes new uses of Big Data analytics, Artificial Intelligence, and evolving data collection methods) during public health emergencies, and considers the impacts of these digital shifts across government, politics, society, law and ethics. Prior to joining the Institute for Global Health, Dr Roberts was LSE Fellow in Global Health Policy in the Department of Health Policy at the London School of Economics. Dr Roberts has held previous research and teaching positions at the Department of Global Health and Social Medicine at King's College London (KCL), and the Department of International Relations at the University of Sussex. He is presently a Visiting Fellow in Global Health Policy with the LSE Health Research Centre, and an Associate Researcher with the Centre for Global Health Policy (CGHP) at the University of Sussex.

Melanie Smallman

Melanie Smallman is Associate Professor in Science and Technology Studies at UCL and a Fellow at the Alan Turing Institute. Melanie's research looks at the role of science and innovation (particularly data-technologies and AI in healthcare) in increasing inequality, and how the social impacts of these technologies can be included in ethical considerations. Previously, Melanie ran science policy and communication consultancy Think-Lab and spent eight years as an adviser within the UK Government. She is a former Fellow in Science, Technology and Society at the Harvard Kennedy School for Government and has a PhD in Science and Technology Studies from UCL.

Geraint Rees

Prof Geraint Rees is Vice Provost (Research, Innovation and Global Engagement), responsible for providing vision and academic leadership for UCL’s world-leading research, knowledge exchange and global engagement across an outstanding comprehensive university, maximising UCL’s collective impact on the world. He is a non-executive Director of UCL Business, one of the UK’s most successful technology transfer companies, and was a Senior Scientific Advisor at DeepMind from 2018-2020. Previously he served as Pro-Provost (Academic Planning) from 2021-22, and was Dean of the UCL Faculty of Life Sciences from 2014 to 2022. With a professional background as a neurologist and neuroscientist, his research seeks to understand the neural basis of human cognition and uses machine learning to develop novel solutions to global healthcare challenges. He has published over 300 research papers, and was elected a Fellow of the Academy of Medical Sciences in 2010.