Cancer patients want health professionals to talk about data
Originally published on 1st December 2016
Macmillan Cancer Support and Cancer Research UK are calling for health professionals to be better equipped to talk to patients about cancer registration and about how their data is used, in a new report released today.
Results from independent research commissioned by the charities show that more than four in five cancer patients in England (83%) feel it is important that they are told about cancer registration and the choices they have about their data being included[i]. Support for the principles of cancer registration is also high, especially among people living with cancer. When given a brief description of how the registry uses cancer data, 85% are in favour of this being used to plan services and research treatment[ii].
Cancer registries store information on cancer patients in order to support public health, service improvement and research. They support genetic counselling and can provide information on patients who have received particular treatments if they require follow-up care. The registries have been at the heart of ongoing improvements to cancer survival, treatment and care.
The charities found that patients strongly support the idea of discussing cancer registration during a face-to-face conversation with a health professional[iii]. So the charities are calling on cancer teams to be able to answer basic questions about cancer registration, and to provide relevant information to their patients.
As a simple first step, hospitals should ensure that the patient information leaflets about cancer registration that are provided by Public Health England are available for staff to use and on prominent display to patients. Both charities have also published new online resources to support health professionals and will be working with Public Health England to continue to raise awareness.
The joint report follows a review into how health and social care data are managed in England, which was led by Dame Fiona Caldicott, the National Data Guardian. Published in July 2016, the review identified a need to improve the way that people are currently informed about cancer registration, and how health and care data are used more generally.
Sarah Woolnough, Cancer Research UK’s Executive Director of Policy and Information, said:
“It’s difficult to overstate just how important cancer data is. High-quality population-based data helps the health service plan for how to best deliver world-class care and treatment to the tens of thousands of cancer patients it looks after every week. This data shows how many people are diagnosed with cancer, and how many are surviving the disease. And data shows us whether this is getting better or worse. Understanding the effectiveness of treatment, what equipment to invest in and where people will need care also relies on this. We believe health professionals, people affected by cancer and the public should know about this vital resource.”
Dr Fran Woodard, Macmillan Cancer Support’s Executive Director of Policy and Impact, said:
“All health professionals who care for people affected by cancer have a role to play in ensuring that they are aware of how their data is used. It’s clear that patients want this information, and they care about being able to make informed decisions about their data. Our charities will work with Public Health England and other organisations to make sure that health professionals are supported to have these conversations with their patients in the right way at the right time.”
For media enquiries contact the Macmillan Cancer Support press office on 0207 840 7821, or the Cancer Research UK press office on 020 3469 8300.
Notes to editors:
Additional information about cancer registration:
· The cancer registry contains information about the person with cancer (NHS number, name, address, age, gender, date of birth) as well as about their cancer and treatment, including the type of cancer or condition, when and how they were diagnosed, what treatment they received and the date and cause of death.
· Registry data is used to help plan cancer services, support genetic counselling, investigate potential causes of cancer and check how well the NHS is doing and how it could improve.
· The cancer registry aims to include information on everyone with cancer in order to provide complete population-level data.
· People diagnosed with cancer are automatically included on the registry but can request that their data is removed if they wish.
· There are strict ethical and security safeguards to protect the cancer registry and access to the data is strictly controlled.
Copies of the existing patient information leaflet for cancer registration can be ordered by contacting NCRASenquiries@phe.gov.uk.
New online resources for healthcare professionals:
About Cancer Research UK
· Cancer Research UK is the world’s leading cancer charity dedicated to saving lives through research.
· Cancer Research UK’s pioneering work into the prevention, diagnosis and treatment of cancer has helped save millions of lives.
· Cancer Research UK receives no government funding for its life-saving research. Every step it makes towards beating cancer relies on every pound donated.
· Cancer Research UK has been at the heart of the progress that has already seen survival in the UK double in the last forty years.
· Today, 2 in 4 people survive their cancer for at least 10 years. Cancer Research UK’s ambition is to accelerate progress so that by 2034, 3 in 4 people will survive their cancer for at least 10 years.
· Cancer Research UK supports research into all aspects of cancer through the work of over 4,000 scientists, doctors and nurses.
· Together with its partners and supporters, Cancer Research UK’s vision is to bring forward the day when all cancers are cured.
About Macmillan Cancer Support
· When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. Whether it’s concerns about who you can talk to, planning for the extra costs or what to do about work, at Macmillan we understand how a cancer diagnosis can take over everything.
· That’s why we’re here. We provide support that helps people take back control of their lives. But right now, we can’t reach everyone who needs us. We need your help to make sure that people affected by cancer get the support they need to face the toughest fight of their life. No one should face cancer alone, and with your support no one will.
· To get involved, call 0300 1000 200 today. And please remember, we’re here for you too. If you’d like support, information or just to chat, call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk
[i] Between the 13th June 2016–4th July 2016, Ipsos MORI conducted an online survey of 1,033 adults in England aged 18+ who have or have had cancer, and of 1,000 adults in England aged 18+ drawn from the general public. Quotas were set on both audiences and corrective weighting used to reflect the known population of England and of people who have or have had cancer in England.
[ii] The figure for the general public was 72%
[iii] In the Ipsos MORI research, when asked what would be the most appropriate way to inform people diagnosed with cancer about the cancer registry, “In a face to face meeting or appointment with a healthcare professional, e.g., a doctor or nurse” was ranked in the top three. This option was also strongly supported by patients during our engagement workshops.