Public support for NHS data sharing key for personalised medicine

By Rebecca Burbidge

8 May 2018


Parliamentary Under Secretary of State for Health Lord O’Shaughnessy has highlighted the vital importance of providing reassurance to the public and promoting the benefits of data sharing for the success of personalised medicine.

Speaking to a full room of parliamentarians and stakeholders at the APPG on Personalised Medicine reception, Harnessing science and technology for personalised medicine, at the House of Commons last Wednesday, the Minister praised the country’s world leading health system, universities and life sciences sector, but stressed that to realise the opportunity of personalised medicine:

We need to strain every sinew to bring the public with us. It needs to not sound like a science experiment, it needs to sound like something that is going to save my mum, my child, and provide reassurance about the kind of information that the state will hold about people and more importantly the purpose to which it will be put, which is about saving and extending lives.

Lord O’Shaughnessy’s remark reflected conclusions of the recent Science and Technology Committee report on Genomics in the NHS, which called for action to ensure public understanding of and support for genomics and data sharing.

APPG Chair Helen Whately MP commented:

Personalised medicine is such an exciting and fast paced area of healthcare. It was fantastic to see so many clinicians and parliamentarians come together to hear from the Health Minister Lord O’Shaughnessy and those in the field. The UK is in a unique position to harness these emerging care opportunities thanks to our universities and NHS, as we heard from the speakers. This is the beginning of the conversation on personalised medicine, and I look forward to supporting the sector and the APPG in continuing that conversation.

Parliamentarians including Jo Churchill MP, Baroness Masham, Nick Dakin MP, Baroness Bottomley and Viscount Ridley attended the event, along with personalised medicine stakeholders from the patient, health professional, policy, academic and commercial sectors.

Prof Sir Munir Pirmohamed (University of Liverpool / Royal Liverpool University Hospital) and Dr Adam Platt (AstraZeneca) also took to the podium to reflect on Lord O’Shaughnessy's speech, and pose questions on the affordability and cost effectiveness of personalised medicine, and whether guidelines such as GDPR will reassure citizens about use of their personal health data.

Prof Sir Pirmohamed added:

It is not a matter of precision medicine verse public health it is actually public health and personalised medicine – it is not a competition. These are both things we should be focusing on and I think as we move forward we should be thinking about personalised prevention as well. 

The APPG on Personalised Medicine is open to all members of the House of Lords and Commons who are interested in exploring how the UK can better use science and technology to create a more sustainable and efficient NHS and deliver more personalised medicine for patient benefit. PHG Foundation provides the secretariat for the group.

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