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The large scale collection and analysis of patient data have become staples of developed health care systems around the world. Patient information on diagnoses, care processes and outcomes gathered from registries, clinical databases, clinical audits and quality improvement programmes is an essential component of an outcomes driven valued-based health care system. In the current era of big data and the development of large health data networks, health care researchers have access to promising new threads of knowledge, potentially leading to more reliable evidence for clinical and health service decision making. Amid this utilisation of patient data, there is a growing debate about the risks and opportunities associated with health data sharing. Harnessing the benefits of health data sharing while protecting the privacy of patients will be a central challenge for current and future big data initiatives in health care.
The London School of Economics and Imperial College London will convene a high-level discussion to explore the issues related to patient perception and trust on the sharing and use of health data, and to propose solutions to improve patient engagement in big data health initiatives. The discussion will feature four speakers representing the perspective of patients, public bodies, health care researchers and experts in the field of public involvement in health research. A prominent panel representing the pharmaceutical sector, health services providers and research charities will comment on and discuss the issues put forward by the speakers.
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There will be a drinks reception after the event.
Agenda
Chair – Dr. Søren Kristensen – Senior Lecturer in Health Economics, Institute of Global Innovation , Imperial College London
1st session – Perspectives
Dr. Harpreet Sood – Associate Chief Clinical Information Officer, NHS England
Mr. Kyle Bozentko – Executive Director, Jefferson Center
Dr. Sarah Fox – Public Engagement and Involvement Officer, Health eResearch Centre, The Farr Institute
Dr. Helen Bulbeck – Founder and Director of Services and Policy, braintrust
2nd session – Panel discussion
Mr. Brendan Krause – Vice President, OptumLabs
Dr. Sarah Deeny – Assistant Director – Data Analytics, The Health Foundation
Mr. Chris Carrigan – Patient advocate, use MY data/ Researcher, Leeds Institute for Data Analytics
Mr. Matt Murray – Research Engagement Manager, Alzheimer’s Society