To mark World Cancer Day, patient advocate Richard Stephens has shared his experience about the importance of incorporating good public involvement in cancer research.
The blog post has been published on the Health Research Authority (HRA) website here and details Richard’s journey first as a clinical trial participant to his role as a patient advocate. He has worked on patient advisory groups and various committees to help improve the information given to participants so they can fully understand the implications of their involvement in clinical research.
‘My first trial involved testing a new chemotherapy drug against standard treatment. I asked to be “randomised” to the new drug. I hadn’t understood what was meant by ‘randomised’ trial. My consultant told me later that she thought I had been joking when I’d asked for the new drug. But the randomisation did put me on it anyway, which was what I thought I’d consented to….
My own misunderstanding made me wonder why patients weren’t involved in writing the information that would be given to other patients.‘
There is guidance published on ‘PPI’ (Patient and Public Involvement) here on the Clinical Governance blog which incorporates guidance available from the HRA website and the National Institute for Health Research’s site.
Conducting PPI is a good way to seek the opinions and recommendations of the public, and can help to ensure that your study is designed and set-up in a way that will be relevant to participants, and of good quality. PPI can also help to avoid any setbacks once the project is underway.
‘Every year more patients are taking part in clinical trials. Evidence shows that cancer patients who take part in clinical research are more likely to report higher levels of satisfaction with their overall care, and are more likely to have better outcomes in research-rich hospitals, even if they don’t take part in trials themselves.
Research participation is good for patients, patient involvement is good for research, and good research produces better treatments and care for all of us.’