The Academy is developing a programme of public dialogue workshops, exploring the issues arising from future data technologies that use or collect health information.Scoping
Use of patient data in healthcare and research
There has been much public dialogue focusing on the current use of patient data, but less has been undertaken exploring how future data driven technologies might impact on this.
A recent report by the Royal Society and the British Academy highlighted that very few studies have investigated attitudes to new and future uses of data. In addition, while some studies have explored potential near-term applications of data technologies, none so far have considered future worlds enabled by data.
To address this, in November 2017, the Academy and Understanding Patient Data commissioned a programme of activities with Ipsos MORI to explore public, patient, and healthcare professionals’ views about new and emerging data-driven technologies that use patient data in healthcare and research.
The report of the public dialogue workshops is now being used to inform an Academy policy project. The project will develop a set of principles which can be used to ensure that the use of patient data in developing new technologies, and their subsequent application, reflect public and patient perspectives.
 The Royal Society & British Academy (2017). Data governance: public engagement review. https://royalsociety.org/~/media/policy/projects/data-governance/data-governance-public-engagement-review.pdf
- Professor Carol Dezateux CBE FMedSci, Professor of Clinical Epidemiology and Health Data Science, Queen Mary, University London (Chair)
- Dr Natalie Banner, Policy Adviser, Wellcome Trust and Understanding Patient Data (co-opted for policy stage of the project)
- Dr Kambiz Boomla, Clinical Senior Lecturer in the Clinical Effectiveness Group, Queen Mary, University of London
- Professor Mandy Chessell CBE FREng, IBM Distinguished Engineer, IBM Master Inventor, Visiting professor (University of Sheffield)
- Professor Bobbie Farsides, Professor of Clinical and Biomedical Ethics, Brighton and Sussex Medical School
- Professor Susan Michie FMedSci, Professor of Health Psychology and Director of the Centre for Behaviour Change, UCL
- Professor John Naughton, Emeritus Professor of the Public Understanding of Technology, Wolfson College, University of Cambridge
- Dr Amara Nwosu, Medical doctor and Clinical Lecturer in Palliative Care, University of Liverpool
- Professor Jill Pell CBE FRSE FMedSci, Director, Institute of Health and Wellbeing, University of Glasgow
- Jonathan Sellors, Legal Counsel and company secretary, UK Biobank
- Professor Lionel Tarassenko CBE FREng FMedSci, Professor of Electrical Engineering and Head, Department of Engineering Science, University of Oxford
- Dr Mary Tully, Director of Public Engagement for Connected Health Cities, University of Manchester
- Professor Dame Til Wykes DBE FMedSci, Professor of Clinical Psychology and Rehabilitation, King’s College London
In November 2017, the Academy commissioned Ipsos MORI to run a series of public dialogue workshops exploring the use of future data-driven technologies.
In February 2018, six workshops brought together around 100 members of the public, patients and healthcare professionals in London, Sheffield and Cardiff.
Through a series of case studies developed by the steering group, the workshops explored participant views on when, how and by whom health data should be collected, used and shared. Participants also considered how new technologies, such as AI and machine learning, might impact themselves, their friends and families, workplaces and wider society.
The findings from these workshops will be published alongside the final policy report later in 2018.
On 24 April 2018 the Academy held a stakeholder workshop with members of the data science, NHS, industry and regulatory communities to discuss the implications of the views raised during the public dialogue workshops.
Both the public dialogue workshops and the stakeholder workshops will inform the steering group in developing principles, aimed at guiding the use of data-driven technologies by organisations which collect, store, share and use health data.
Communications and Engagement Manager
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FORUM Policy Manager
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