Over the last two years we’ve run a Dragons’ Den session, as we’ve called it, as part of the consumer liaison groups’ own meeting within the conference. But it’s been so successful we felt it would be interesting to expose it as a main conference session and fortunately the conference committee agreed. So we’ve just completed it, an hour where eight research teams have sold, and I use the word carefully, their research concept to a group of informed patients, consumers as they’re known usually within the NCRI, and taken feedback about their research study.
Looking at the room, it went extremely well. The room is technically one for which 50 people are allowed; we closed the doors at 80, it seems that most of the staff that couldn’t get in were actually research management staff, but there we are. We had the important people in, the researchers themselves and the patients. We probably had 80 people in the room and each of the eight studies that we looked at had its own table and five, six, seven patients working with them.
Which study were you most interested in?
I stayed with one particular study which was the stratified medicine study that CRUK is running. The other studies were on lung cancer and the use of radiotherapy in lung cancer; there was an AstraZeneca drug study, which was the only one of the studies which was commercial, and there was a breast cancer study in there and a study in nutrition as well. So it’s a very broad spread – active treatments, advanced cancer medicine, radiotherapy etc. I stayed with the stratified medicine study which I knew a little bit about from what I’d read and learnt a lot more today. We had some very interesting discussion about genetics and the level of information that patients can and could and maybe should be exposed to before they enter such a study. I hope that what the researchers got out of it was firstly what they expected to get out and then some of the things they didn’t expect to get out. Little comments on the side, for example one of the comments that came up in our discussion was the importance of the relationships that patients have with their families when discussing a clinical study and how that relationship can impact on the decision to enter a study or not.
Any key points where the patients could influence this research?
The area of genetic medicine, of course, is a huge one and the Cancer Research UK stratified medicine study is pushing some boundaries with the genetics that it’s going to start uncovering. We’re particularly concerned, of course, about hereditary traits that may be discovered as part of the genetic analysis that is going on in the study and how these might be communicated back to patients and possibly the family members who might be impacted by that. I don’t think there are any quick conclusions to that discussion but it’s certainly a discussion we got into.
In the long term this discussion could benefit both sides?
I hope the benefit is to research generally and ultimately to patients who enter research but we’re not looking necessarily for benefits to come back to us as individuals although we’re the kind of people who are inquisitive and enquiring and get some satisfaction from the kind of discussions that we’re able to have.