35th ESMO Congress, 8–12 October 2010, Milan
ECCO’s Patient Advisory Committee:
Peter Goodwin – ecancer broadcaster and facilitator
Ellen Verschuur – Europa Donna
Stella Kyriakides – Europa Donna
Tom Hudson – Europa Uomo
Anita Waldmann – Myeloma Euronet
Gerlind Bode – ICCCPO Europe
Kathy Oliver – International Brain Tumour Alliance
Jan Geissler – Leukämie-Online
Accurate balanced reporting of cancer information
PG: The Eurocancercoms initiative, the whole idea is to give people a one-stop shop so that you can get information about science whoever you are, whether you’re a journalist, Wikipedia, Google, you name it. Do you think that things as they are at the moment are sufficient? What can we do to improve communications and the use of the media?
TH: If possible, make thing easier.
PG: How?
TH: Well, make sure that the language is easily understood. I made that point a moment ago but it is a critically important thing. Because we’re familiar, we all tend to use phrases that people don’t necessarily understand.
PG: So demystifying is still important?
TH: Vitally important, I think.
SK: Also pulling it all together. I think that this is one of the very important aspects of this project. First of all we’re going to know what’s out there. I don’t think we have any idea how much is out there, what’s out there and just having that pulled together will allow us possibly to then see how this should be used and put out in a way that will be effective and useful.
GB: That’s right, it has to be valid information, it has to be clear and accurate.
SK: Yes, accurate information. Reliable, yes.
AW: And it has to be very easy to find, so not as Google, that you have 40,000 messages, links to find the right information.
PG: Tom, you talked about language, now scientists need, for their own sake, to look clever so they probably do want to use big words. At the same time, they don’t want to show off. They don’t want to seem to be showing off because that would be immodest, at the same time they have to show off otherwise they won’t get promoted. Do you think that some of the experts at the centre of this are in a difficult position?
TH: I think they need to remember that they need to talk to us in a language we understand. It’s as simple as that.
PG: And what kind of measures would you take?
TH: Well people need to stop and think what they’re doing because we’ve just come from a session and it was very interesting but one of the speakers was talking about facts and figures that really meant nothing to me and probably, if other people in the audience admitted it, it probably meant nothing to about 95% of them. OK, a small factor but it’s something if you’re using it every day you forget that other people don’t speak your language.
PG: What about journalists, because journalists love a good story and isn’t it wonderful to say there’s a new cure for cancer?
TH: Sure.
PG: Well actually, depending on the size of the study, if it’s a very small study however great it looks there isn’t a new cure for cancer. What do you all think about this?
SK: I think sensationalism is part of it and we know it and you see it coming up in the media all the time. Saying that, I think that we often see the good stories being reported but you very rarely see the bad stories being reported. What we, as patient advocates, need to try and always give is the realistic side of cancer but we also have to respect what you said earlier – everybody has their own agenda and I think that’s acceptable as long as we’re aware of the agendas and how they’re being used and we try to use them in favour of the patient, then we’re never going to get everyone speaking from the same point of view because that’s impossible.
PG: As a result of all of this, do patients trust the media, the different media, media in all its glory, do you find?
TH: To an extent, yes, maybe.
EV: Yes, a certain extent. You can’t say in general that, no.
SK: I think we need to demystify the media as well and what I think is very useful is that you learn that you can work effectively with the media, you find key people, you make sure that you give them information, that they have reliable information and then you’re able to work with them. I think it’s very important to build up relationships with the media and to target people in the media that are going to be able to get your messages across.
KO: I was just going to add that I am an ex-journalist, I have to say, so I’m going to defend media and journalists. I think sometimes patients aren’t made aware of everything that’s out there in terms of treatments and sometimes the media does serve to enlighten patients. I know of examples of patients taking articles either off the internet or whatever to their clinicians and presenting them with this information and the clinician actually says, “Well actually that’s quite interesting, I will look into that.” And there has been a subtle shift about clinicians being more accepting of things we print off the internet now, as opposed to five or six years ago.
PG: One of the things that worries me is that internet material has to be put there by organisations that pay for it, so if you want to promote something, you can put it on the internet. So, to what extent can we trust things, new cures for cancer?
TH: I have a question for you, is there a way of having a quality assured site? In other words, a certain site or if there was rather like the kite mark in the UK, if there was some way of assuring that information on a certain site or sites was guaranteed to be at least correct by its author… I don’t know, it’s an open question.
KO: There is a system called the ON system, I believe.
PG: Let me answer that very briefly, this is exactly what the European Institute of Oncology wants to do and the great European initiative with Eurocancercoms.