Cancer Research UK and Macmillan Cancer Support commissioned Ipsos MORI to find out what people living with cancer and the general public think about the process of cancer data collection. The research set out to gain a deeper understanding of the views of people living with cancer and general public on the collection of data in the cancer registration system. The project had several objectives within this.
- To explore awareness of the cancer registry.
- To understand when people affected by cancer and the general public think is the most appropriate time to inform patients about the collection of cancer data.
- To understand people affected by cancer and the general public’s views on informing people with cancer about the registry under specific circumstances, such as at the end of life, and what should happen to the data if people in these circumstances are not informed.
- To explore how general attitudes towards health and cancer data compare between the general public and people living with cancer.
Ipsos MORI carried out an online survey with 1,000 members of the public and 1,033 people who have or have had cancer. All respondents were interviewed online and in England, aged 18+. The data are weighted to be representative of gender, age, region and working status for the general public; the data are weighted to be representative of gender, age and NHS region for the cancer audience. Fieldwork was carried out between 13th June 2016 to 4th July 2016.
Key findings include:
- Two-thirds of people living with cancer (65%), and half of the general public (52%) support the current method of data collection for the cancer registry, which involves patients who have received a cancer diagnosis in England being automatically included in the cancer registry. Respondents were also informed that people can remove their data from the cancer registry if they get in contact and request this.
- The majority of people living with cancer and the general public think it is important that cancer patients should be informed about the cancer registry (83% and 86%, respectively), though currently awareness among patients and public is low (6% of people living with cancer have heard a great deal or a fair amount about the cancer registry; 3% of general public).
- There is high support among people living with cancer for the different potential uses of their data. Nine in ten cancer patients support cancer data being used to plan cancer services (90%) and a similar proportion support this data being used to research the causes of cancer (92%). Support is similarly high among the general public for these uses of data.
- When presented with information about the cancer registry, over four-fifths of people living with cancer (85%) and nearly three quarters of the general public (72%), agree more that data about cancer patients should be collected to improve services and treatments than think this data should not be collected because of the privacy concerns.
- Read the full review of informed consent in the cancer registry by Macmillan Cancer Support and Cancer Research UK