What next for health data partnerships?

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.

In light of the pandemic, understanding these views will be all the more important for ensuring the system for using healt data is trustworthy. This event will take the form of a briefing from Understanding Patient Data on the findings of the report, followed by contributions/replies from three or four senior figures in the healthcare sector. This will lead into a discussion and audience contributions to reflect on key insights from the report and its relevance to the covid-19 response. Participants will also discuss what steps are required by government and NHS organisations to improve public trust in the way data is used.  

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

  • The previously announced Office for Life Sciences Commercial Framework, which is designed to align how NHS data partnership are made, with public expectations. 
  • The Health Data Research UK data hubs and its own emerging commercial framework.
  • The development of the Centre for Expertise within NHSX which will be tasked with advising NHS organisation on how to enter into third party data partnerships.

The date of the event will be announced in the coming weeks, for more information in the meantime, please contact jack.tindale [at] policyconnect.org.uk (Jack Tindale).