Sarah Woolnough: The importance of patient data for research

In the UK, one of our most valuable resources in the fight against cancer is our pool of patient data. Records of the nation’s health stretch back decades. And these data are unsurpassed globally. Cancer Research UK has benefitted hugely from the opportunities that this resource represents. We’re committed to ensuring that in the future our researchers can continue to carry out groundbreaking research using patient data.

Historically, patient data has been behind some of the most significant discoveries in cancer research—notably the link between smoking and lung cancer.

Population studies advance our understanding of the factors which influence this disease. In 2010, we funded a landmark study into the preventable causes of cancer which demonstrated that smoking, diet, alcohol, and a range of other lifestyle factors are behind over 40 per cent of cancers diagnosed in the UK each year. Studies like this empower individuals to make informed choices about their own health and support public health officials in their work on cancer prevention.

Patient data is also vital for recruitment to clinical trials. This information allows researchers to identify eligible participants. These trials are fundamental to developing promising new cancer treatments and are a real strength of UK research—we have the highest number of cancer patients taking part in clinical trials worldwide.

But the current system to access patient data can be problematic. The process which researchers must go through is often unclear and inefficient, involving duplication of effort and conflicting decision making. The government is consulting on how patient data should be used in research, with a public consultation expected shortly. We are calling on them to provide a clearer and more streamlined system to allow approved researchers to access patient data securely.

We are also supporting an amendment to the NHS Constitution, introducing a default option for patient data to be used in NHS research, allowing patients to opt out should they choose to. The UK population is highly engaged with research and we believe that the government has a responsibility to make the most of this. In the 2012 Department of Health National Cancer Patient Experience Survey, 95 per cent of patients who discussed research with their doctor were glad they did so and over half of those who did not discuss it wished they had. We strongly believe that we should build on this enthusiasm by giving patients the opportunity to participate in research either by contributing their data to population studies or by being invited to clinical trials.

Access to patient data is a sensitive issue. Properly used, health information has the power to do enormous good, but it is also highly confidential and must be kept secure at all times. Researchers should be able to access data efficiently, but at the same time, we are committed to ensuring that the public feels safe in the knowledge that their data are being handled appropriately and safely. Researchers accessing data must be subject to strict professional regulation and the public should be kept fully informed about how their data are being used.

The ethical issues surrounding the use of data are complex, but this does not mean we should shy away from reforming a system which is far from perfect. Secure and efficient data sharing among researchers has the potential to offer huge rewards. It will give everyone in the UK the opportunity to contribute towards research and allow us to use this invaluable asset to better understand cancer and, ultimately, to save lives.

Sarah Woolnough is executive director of policy and information at Cancer Research UK, with responsibility for policy development, public affairs, campaigning, and tobacco control. She is responsible for the charity’s policy development across a wide range of public policy issues—from medical research to cancer services policy. Sarah also leads public affairs functions in Westminster, Cardiff, Edinburgh, Belfast, and Brussels and a campaigning function that has successfully campaigned for improvements to radiotherapy treatments and tobacco control measures, including a ban on shop displays of cigarettes.

In 2010 Sarah was seconded to the Department of Health to develop the government’s new cancer strategy—Improving Cancer Outcomes: A Strategy for Cancer—which sets out an ambitious agenda to make our cancer services world class and commits England to saving an additional 5000 lives per year from cancer by 2015.

Sarah sits on a number of national working groups and is a trustee of the Association of Medical Research Charities (AMRC) and health charity Bliss.