Briefing: patient information
Information plays a crucial role in supporting people with long-term conditions to take care of themselves and improve their quality of life. Information can help people affected by cancer, and those supporting them, to make sense of their situation and the choices that are available to them about how, when and where they, or their relatives, receive their care. 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 high quality patient information through our patient information website, CancerHelp UK, and our telephone helpline staffed by cancer nurses.
Cancer Research UK has also undertaken a new venture called Cancer Chat. A discussion form designed to enable those affected to talk to others, share experiences and find information.
Some other cancer charities also produce patient information about cancer.
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.
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 and a Department of Health White Paper 'Our health, our care, our say' (published in January 2006) make several recommendations for improving the information provided to patients.
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 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 is working in partnership with Macmillan Cancer Support (and previously CancerBackup) 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.
Roll out and uptake across the country of the both these initiatives will need monitoring. New initiatives require not only money, but also time and manpower committed to them to ensure that they are serving patients. Furthermore, the Cancer Reform Strategy recommends that all cancer networks consider creating a patient information manager post and identify information leads in each trust in their networks. We look forward to hearing from the Cancer Action Team how each of the networks are meeting this requirement in their annual review of implementation of the Cancer Reform Strategy.