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

Patient needs that should be met by patient advocates and web resources

PG: There are quite a few things that worry me also - fear of cancer, to what extent do you deal with this in your patient organisations?

TH: It’s a reality; we meet it every day.

PG: And how do you deal with people’s natural fears?

AW: To communicate, to really talk to them or if you have some examples you can show.

KO: To reassure them that they’re not alone, they’re not the only people, and that’s what’s great about the internet again – it connects people with the same problem.

SK: I think it’s very realistic for people to be frightened of cancer but then when you actually talk and share it with them, cancer is not one disease and there is so much out there and you can actually involve them in sharing the knowledge. But in some countries there is a lot of, not only fear, but guilt about cancer so that you will often hear, “What did I do wrong? I eat well, I exercise, why did I get breast cancer?” And this is about having the ability to tell them if they’re using the internet and using the right sites, say read about it. And it helps take a weight off their shoulders sometimes because I think that there is still a lot of not only fear but guilt out there related to cancer diagnoses.

PG: Jan, you’ve dealt with all of these sorts of things, haven’t you, quite a lot? What kinds of ways have you found are effective for spreading the information accurately to the people who need it?

JG: Well it depends what the, let’s say, target group is. It depends whether I address young people, I can probably address them on social media; if I address the relatives, I probably need to think about what their age is. We’re talking about age and there’s no single tool for everyone and that’s why patient groups need to adapt to the different channels. For example, I’m a young patient advocate and I’m following Twitter and I know which people I trust so I get all the news from the different conferences because patient advocates are at the conference, are reporting live what is being presented. But that’s not a tool for everyone but at the same time I use these sources to put it onto a blog because that some people that are twenty years older read.

AW: Again I think it’s also necessary that we connect or that we are networking to each other, to share our experiences.

JG: And that’s the interesting thing, while we are sitting here for this interview there’s probably someone sitting in the sessions and reporting via Twitter what is being presented there and that’s why I have the feeling, even if I’m in the office at home, I have people that are at the conference, are reporting and seeing if there’s anything new for my disease. That makes things very interesting, you don’t need to be physically there all the time.

PG: Let me ask you, to try and wrap it up then, we want to have a unifying portal, a one-stop shop to get your cancer information on. Can I ask each of you what sort of solution you see in a couple of years ahead or in the near future? Let’s start from this end.

EV: It’s quite difficult to answer just in a few sentences because you need to be aware of how you’re going to address your readers or your audience, whatever you call it. So I think it’s quite ambitious to create a one-stop shop.

AW: I agree, it has to be as short as possible to get the information you want to have. I think it will be a challenge.

PG: So you’re a Twitter girl are you?

AW: No, I’m not a Twitter girl but I’m going a lot through the internet.

GB: I’m still a book girl but, on the other hand, we have a lot of survivors who are using the internet much more than the older ones do. They need all the information they can get because they need to know what are the delayed effects, what do I have to do with myself?

PG: And how to integrate it? How would you integrate it?

GB: They need the information somewhere in this one-stop shop, somewhere.

PG: OK, so a website could be the starting point. That’s what you’re after, is it?

GB: Yes, a website then also Twitter and these types of things.

PG: Tom, does that satisfy you as well, a website, as a basis of it?

TH: It would be wonderful.

PG: It excludes some people though, you said.

TH: Well it excludes a lot because one of the problems with men is that they don’t talk to their families. This actually is a major problem because OK, we’ve said if you get a cancer diagnosis it affects the whole family, but a man tends to shut off, he doesn’t talk to his wife and this creates a whole new area and it is something that maybe, and in fact in a lot of cases, wives will contact us for advice on how to deal with their husband and it’s not the husband who is coming to us. So it opens a whole new issue and a very different area.

PG: And Stella, your thoughts from Cyprus?

SK: I think my one-stop shop would probably be a six-floor department store.

<Laughter>

PG: And a big bag.

SK: What I would like is exactly that. I would like to be able to go onto a website and have it link, find links of reliable other sites that I could access. So I don’t think it could all be under one website but I think that there could be links. If we are able to pull everything in together and see what’s out there and find those links then, yes, a one-stop shop that goes out into a department store.

PG: And easy instructions to help you do all the other things.

SK: And easy instructions.

PG: All the other clever things.

KO: I think that’s crucial, it has to be really user-friendly because if it’s going to be a portal to a complicated world of information, it has to be user-friendly, attractive. It has to appeal to a big age range as well because you’ve also got the patients, the care-givers, the families, the friends, everybody is using this site.

PG: And Jan, your one-stop shop?

JG: Well I think the experience of fifteen years of internet shows that having a central editorial team to build the super-portal network works. So what needs to be done is use the wisdom of the crowd because what the internet people say the wisdom of the crowd means is thousands of people out there who are at conferences, who are speaking there, who are journalists, who are patient advocates. So you need to get them contributing their knowledge into the portal, give them recommendations, use Wikipedia style information. Let them suggest the links and let people rate it because bad content will fall out by rating immediately when experts are there. So I think that’s essential for such a portal.

PG: Well these are clearly conversations that we’re going to need to continue for a very long time and we’re going to need to pass on our wisdom, our thoughts, to the European authorities and the bodies organised with Eurocancercoms. So, with that, I’d like to thank all of you for joining me this evening. I’d love to just chat forever about this, I’m sure that’s not the right thing to do because we now need to go off and talk in small groups and actually get things done. So from the ESMO conference here in Milan, it’s been a real privilege having you on ecancer.tv. So goodnight, and thank you very much.