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
Influence of electronic media on the communication of cancer issues
PG: What have been the difficulties and has the scene changed, do you think, in terms of communication with the advent of e-media?
JG: Well it has completely changed the way patient groups are actually operating because twenty years ago when you founded a patient group, you needed quite some resources to found local groups, to do printing, to disseminate information to patients, whilst the internet has changed not only the way to give information to patients but also to connect advocates and to give them access to adequate information.
PG: Now let me ask you, if I may, Ellen in Europa Donna you have had amazing success really because Europa Donna is a name that comes up at every cancer conference, I know this from attending cancer conferences. What have you done to achieve that sort of visibility, which media have you used, what are the challenges that you’ve had to rise to?
EV: We were founded in 1994, at that time the social media was not developed like it is today. So what we did in the beginning, we stuck to our messages, we took one message at a time. We have now developed to a real web-based organisation in terms of our newest project which is the Breast Health Day and this year we have only digital projects which are only available on the internet. We use Facebook, we use Twitter and we use YouTube, just to get the message across.
SK: I think that possibly the success of Europa Donna is also attributed to the fact that the information available through its site and through all levels of its advocacy is responsible, up-to-date information; it’s not sensationalistic, it doesn’t use patients or abuse patients; it works in partnership with all other people involved. I think that this has given it the credibility that has led to its success, without that, no matter how much you use the media, people will not stay logged on to your site or to your information.
PG: You said site, now websites obviously are crucial to this. What do you need to do to communicate well and do you feel that you’re getting the message across to the different target groups?
EV: You have to have up-to-date information, that’s very important. So you have to renew your information constantly; once something is happening at a conference or whatever new treatments, you have to.
AW: And it has to be in an easy to understand language.
PG: Because people get bored if the website doesn’t change, don’t they?
TH: That’s a particularly important point because if it’s not in a language that people can understand, the public viewing it do not comprehend what’s going on and I think we all sometimes fall into the trap of talking, using medical terms and things like that. That can be a disadvantage or a handicap because the guy looking in on the website doesn’t necessarily understand what this talk is about. We really need to, certainly from the men’s point of view, need to simplify and make sure that it’s a very clear cut message.
PG: Do you feel that people have different agendas? Because on the one hand the scientists and doctors have an agenda; the journalists definitely have an agenda – they want to have a good story; the public have an agenda – they want to be entertained or astonished; the patients have an agenda. What do any of you think about this?
TH: Even different patients in a group, in the same group can have a different agenda.
KO: We actually discovered that our website could be a great campaigning tool when we were involved with an appraisal of a particular therapy in the UK. We used it to contain a patient toolbox that they could print out and take to their MPs or their doctors or whoever to raise awareness of this particular appraisal of a drug. That was an extremely useful way of spreading the word. We never would get the kind of exposure with printed materials that we would with an internet site, a website.
PG: So internet, what about email as well? What about Twitter, what about Facebook, all these?
KO: Couldn’t live without it, couldn’t live without it.
PG: The social media. Can any of you tell me what has the social media revolution done to your work?
SK: It’s changed considerably the way that we need to address issues but on the other hand I am not absolutely sure that we need to be totally dependent on that. There are still generations of patients and their families who are not familiar in many of the countries with the internet; they are not on Facebook, they are not familiar with the use of the internet and you need to use all types of media as a patient advocacy group, you cannot suddenly go totally electronic but you need to use the press and the radio and TV because you always need to address different types and groups of people. So we need to be very aware of that and not move further ahead than the people that we are trying to address are.
AW: Also to countries.
SK: And different countries, it’s not all the same and not all patients and their families and people are the same.
TH: Yes, particularly with men there’s an age factor as well. The younger man will be very knowledgeable and will use all these; the older man does not or doesn’t necessarily have that facility.
PG: So differences between older and younger, what about men and women?
TH: Huge differences.
PG: What about different countries? Gerlind, you’re concerned with a very big range of countries, aren’t you, with your…?
GB: I’m very happy about the internet because this way we are able to get out to Africa, to all different parts of the world, in China, in Russia, everywhere. When I’m looking back to the old days when fax was already something wonderful, so that they could get messages around during times when other people were sleeping, this is now good that we can really reach out.
PG: And Kathy Oliver, do you have an improvement or a difference in your very international group now, as compared with before?
KO: Absolutely and I agree with you – we really couldn’t live without it. It’s increased awareness of brain tumours and the other point is too that some brain tumour patients, because of their physical disabilities, rely tremendously on communicating with people from their own homes.