On Monday 14th March I volunteered to take part in a focus group considering how best to involve patients in the development of new drugs. Patient involvement in research seems to be a growing interest nationally and also chimes well with the mission statement of Derriford Hospital – putting the patient first.
The study is being undertaken at the University of Kent and links specifically to the development of a new drug to be used in conjunction with Mitomycin after TURB-T to increase its effectiveness in the treatment of non-invasive, high risk bladder cancer. Patient involvement would not be as guinea pigs but rather as end users who might have useful contributions on the administration of the drug, any side effects and outcomes.
In a Teams meeting with other patients being treated for bladder cancer and two researchers from the University of Kent we discussed a series of questions including whether we, as individuals, would be interested in taking part in the research, how much we understood about drug research and clinical trials, why patient involvement might be useful, how we might wish to be involved (face-to-face meetings, on-line, in print, etc) and what we expected to get out of it.
The discussion highlighted our different experiences of support and engagement with support organisations. At different stages of treatment from different backgrounds and from different parts of the country we all declared an interest in being involved and expected no remuneration because we all felt that we personally might benefit and others certainly would and that would be reward enough. Hopefully I will continue to be involved in this research and be able to share elements of it with our group.
Hilary R