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Why patients need to be involved in using data to transform cancer care

16
Dec
2014

This year’s Britain Against Cancer conference brought together MPs, policy makers, researchers, clinicians and patients to discuss cancer policy.

Posted on 16 December, 2014 by Eva Sharpe

What would you ask politicians about cancer policy if you had the chance?

This year’s Britain Against Cancer conference was an opportunity to do just that, bringing together MPs and policy makers with researchers, clinicians and patients to discuss cancer policy. It’s an annual policy event organised by the All-Party Parliamentary Group on Cancer

This year the keynote speakers included Simon Stevens, Chief Executive of NHS England, Health Secretary Jeremy Hunt and Shadow Health Secretary Andy Burnham. The audience had the opportunity to quiz the keynote speakers on their plans for the future, covering a range of topics on priorities for spending, public health initiatives, drug pricing and NICE appraisals.

One of the conference sessions that I was particularly interested in was the expert panel discussion, which featured Professor Nazneen Rahman, Head of Genetics and Epidemiology here at The Institute of Cancer Research, and Head of Genetics at our partner hospital, The Royal Marsden.

Professor Rahman was joined on the panel by John Baron, Chair of the APPG on Cancer, Geoff Thomas, patient representative and former England footballer, and Professor Julia Verne of Public Health England.

The panel fielded questions on all aspects of cancer research, prevention and treatment, including patient-centred cancer care, the use of patient data in research, public health projects such as HPV vaccination and genetic testing. 

Professor Rahman told the audience that access to patient data will empower researchers to gain new insights, and highlighted the importance of bringing the public into discussions.

Professor Rahman spoke of the need for good public information and clear communication, suggesting that we need to be innovative in finding ways to communicate with hard-to-reach groups. She highlighted the importance of not just giving clear information, but gaining patient input and involvement into decisions which affect them such as the use of patient data.

When asked about BRCA testing, Professor Rahman spoke of the work at the ICR and The Royal Marsden in bringing BRCA testing to all ovarian cancer patients at the hospital, opening up targeted treatment options and providing important information for family members. You can read all about the Mainstreaming Cancer Genetics Programme here.

These messages about the value of patient data and communicating clearly with patients and the public were echoed throughout the conference, as was the importance of prevention and early diagnosis.

I really enjoyed listening to the range of speakers at the conference, and it was a valuable chance to catch up with others working in the cancer policy field. The conference throws up lots of opportunities for collaborations and discussion, so watch this space to keep up to date with the policy projects we’ll be working on in 2015.

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