Our policy on providing information to patients

We need to ensure that a person will have access to, or receive, the right information when they need it most, at diagnosis and as their care continues.

Cancer Research UK provides free, comprehensive information for anyone affected by cancer through our website, Cancer Help UK, our telephone helpline staffed by specialist cancer nurses, and our online forum, Cancer Chat, which enables people affected by cancer to share information and experiences.

Some other cancer charities also produce patient information about cancer.

In England, NHS Choices is a website set up by the Department of Health to provide patients with access to a wide range of information aimed at improving their involvement in their care.

However, access to information still varies across the country, and for different cancer types. To address this, the Cancer Reform Strategy (published in December 2007) and a Department of Health White Paper 'Our health, our care, our say' (published in January 2006) made several recommendations for improving the information provided to patients, including the introduction of:

Information pathways

These include the introduction of tumour specific information pathways and the provision of information prescriptions for everyone with a long-term condition or social care need.

Cancer Networks are working with the National Cancer Action Team to develop standardised information pathways. Initially cancer networks mapped information pathways locally. These are now being developed into national pathways. These flag up to healthcare providers all the different information products that patients with specific cancers may wish to access at different points of their care pathway.

The pathways include information from a range of sources including Cancer Research UK.

Information prescriptions

Information prescriptions direct people to relevant and personal sources of information about services and treatments that they will need at key points in their care journey.

Cancer Research UK has been working in partnership with Macmillan Cancer Support (and previously Cancerbackup), NHS Choices and the Department of Health to develop an online system to provide access to the information pathways and deliver information prescriptions for people with cancer. This service will be available via NHS Choices.

The Cancer Reform Strategy also recommended that all cancer networks in England consider creating a patient information manager post and identify information leads in each trust in their networks.

What we want the Government to do

We want the Government to ensure that all patients have access to high-quality information at all relevant points along the patient pathway to ensure that they can make fully informed choices about their care.

Healthcare professionals also need to be provided with accurate and up-to-date information about the choices available to their patients and how best to communicate with patients to ensure the choices they make are fully informed and evidence based.

Initiatives aimed at improving information for cancer patients are very welcome. However, new initiatives require not only money but also time and manpower committed to them to ensure that they are serving patients. Roll out and uptake across the country will need monitoring.