Radiotherapy safety research: Patients are doing it for themselves

2008 Conference

We are two former radiotherapy patients who became concerned that patients were routinely not being told they could use 2-way intercoms if any problems arose during radiotherapy treatment. We discovered that, 2 years after a radiotherapy ‘serious untoward incident’(SUI), an independent report (with its 36 recommendations) had not been shared with the wider radiotherapy community. We obtained a copy under the ‘Freedom of Information (FOI) Act, 2000’. We read, ‘Very little information seems to be collected or publicly shared on radiotherapy adverse events either nationally or internationally’. Even the Royal College of Radiologists had been forced to resort to the FOI Act to obtain the report.

Further research showed the urgent need for:

• mandatory in-vivo dosimetry monitoring
• a unified national reporting system of radiotherapy incidents/use of ROSIS
• risk management training
• photographing of patients to prevent mis-identification
• a legal definition of SUIs
• increased medical physics staffing levels
• improved supervision of trainee medical physicists and trainee radiotherapists.

We shared our findings with stakeholder organisations and wrote an article in Health Care Risk Report1 to raise awareness of radiotherapy patient safety issues, which raised debate in the British Medical Journal and helped precipitate a major review of radiotherapy safety.

Lay people can get involved in successful research, even when they have no medical research training.