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Cancer patients say they want to take part in research

Half of all cancer patients who are not invited to participate in research would like to have been asked, a survey has shown.

The Department of Health’s second national cancer patient experience survey found that two-thirds of cancer patients had not had a discussion with anyone about taking part in research. Of these, 53 per cent said they would like to have been asked.

The percentage is lower than that recorded by the Association of Medical Research Charities in 2011 when it found that 80 per cent of patients would like their doctor to offer them the opportunity of allowing a researcher to access their records.

“Medical research charities, whose work is funded by patients and their families, know how important it is that patients are involved in research,” said Sharmila Nebhrajani, chief executive of the AMRC, commenting on the DH survey results on 20 August.

The survey, which was completed by 71,793 people, found that 95 per cent of patients who were invited to discuss research were glad to have been asked. According to Matt Seymour, director of the National Cancer Research Network, “This confirms that it is right to give as many people as possible the option of getting involved.”

Seymour added that NCRN is working on increasing the levels of patient involvement in clinical studies.

The survey found significant variation in the proportion of patients saying that participating in research had been discussed with them. Scores ranged from 39 per cent of breast cancer patients to only 15 per cent of urological patients. Lung cancer patients were towards the top of this range, at 35 per cent.

The British Lung Foundation used the survey results to call for more research funding. Caroline Stevens, the BLF’s interim chief operating officer, said: “While lung cancer patients rated their treatment more highly than patients with other forms of cancer in some areas of the survey, we know that lung cancer research is relatively underfunded compared to other cancers.”

Since the survey was conducted, the government has passed the Health and Social Care Act 2012, which requires the NHS to promote research.

“Doctors and clinicians need to tell patients about research opportunities,” said Nebhrajani, “and charities with their active and powerful patient support groups could be a really important way to help publicise those opportunities”.

Simon Denegri, the national director for public participation and engagement in research at the National Institutes for Health Research, called for further work in this field. “Insight into the patient experience from a research perspective—at what point in their care and treatment should the conversation take place, with whom and how—will increasingly be important,” he blogged. “That’s why today’s survey must be repeated but also used as a prompt for further inquiry.”

The upcoming consultation on the NHS constitution will ask whether the NHS should assume by default that a patient consents to their data being shared with researchers.