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What next for health data partnerships?

What next for health data partnerships?

29th October 2020
10:00 - 12:00

The All-Party Parliamentary Group on Data Analytics and the All-Party Parliamentary Health Group are delighted to host a parliamentary symposium to brief policy makers on the findings of Foundations of Fairness: what next for health data partnerships?, a landmark report by Understanding Patient Data at the Wellcome Trust in partnership with the Ada Lovelace Institute

The Covid-19 pandemic has shone a light on the tremendous value that data held by the NHS has as part of the public health response. Often, there are benefits to making this data available to third parties including academics, charities and commercial organisations, and such arrangements are critical to the UK’s life sciences and research sectors.

The Life Sciences Sector Deal Two recognised this and outlined how the UK can take a leading role internationally, recognising the unique scale of the NHS’s provider system. However, the public are understandably wary of these uses and the risks of patients and the NHS being exploited. This report, published before the pandemic, explores public attitudes towards third party use of NHS-held data, including patient and operational data.  It summarises findings from three citizens’ juries and a representative national survey, showing that the public expect data they provide the NHS to be used for public good and for the benefits to be shared equitably.  

This symposium will provide an opportunity to hear what the public believe constitutes a fair value exchange between NHS organisations and third parties that access health data.

It will also provide an opportunity to discuss other relevant areas of public policy, including:

  • The forthcoming Data Strategy for Health and Social Care announced within the National Data Strategy by Oliver Dowden, Secretary of State for Digital, Culture, Media and Sport in September 2020
  • The development of a Centre of Expertise within NHSX which is tasked with advising NHS organisations on how to enter into third party data partnerships.
  • The Office for Life Sciences Data Framework, which is designed to align how NHS data partnership are formed with public expectations.
  • The Health Data Research UK’s Health Data Research Hubs and its own emerging commercial framework.

To RSVP for the event, please sign up at the following link.

For more information in the meantime, please contact Jack Tindale.