The Educated Patient and the Internet

Vital Options presents Advocacy in Action (AIA), in partnership with the ESMO Cancer Patient Working Group and in collaboration with the ECCO Patient Advisory Committee. This six-part AIA Forum brings together influential leaders in cancer advocacy, to address the core issues that impact cancer survivorship.

Joining Vital Options CEO, Selma Schimmel, will be AIA co-chair Lorenz Jost, Chair of the ESMO Cancer Patient Working Group, joined by co-moderators Stella Kyriakides, Chair of ECCO Patient Advisory Committee and Europa Donna; Cora Honing, European Cancer Leagues (Dutch Cancer Society); Louis Denis, Europa Uomo; Richard Sullivan, Eurocancercoms PatientView Survey; Francesco De Lorenzo, European Cancer Patient Coalition; and Jan Geissler of CML Advocates Network. Special guest, ESMO President David Kerr, will join leading patient advocates across disease areas in this vital discussion for the European and international cancer patient community.

For more information on ESMO Guides for Patients, CLICK HERE.

Advocacy in Action at the 2011 European Multidisciplinary Cancer Conference was made possible, in part, by:

 

VIDEO TRANSCRIPT

Selma Schimmel, Founder & CEO, Vital Options International:

It’s about the educated patient, continuing what we’re already discussing and the need for patient friendly educational materials in the use of social media because the way patients are gathering information now is obviously very different than it used to be. And also the question of since everything is out there on the Internet what happens to patients that are reading information from another country or break through in technology that may not be available for them? And what is that like, because there was a time where a patient could be more isolated from all this information, but today it’s in your face.

Jan Geissler, Co-Founder, CML Advocates Network:

I mean we’ve touched upon the topic of the needs of patients about clinical trials. I’d like to expand that a bit – what information patients really need and what role does the Internet play in that. And first of all, of course, information about the disease or after recurrence about the new form of the disease is very important. But then patients need to know much more about clinical trials but also lets say side effects on complementary medicine which they might take whether you want it or not, interacts with other medicine they’re taking, or even adherence because we’re always expecting the patients are taking their medicines as they are being prescribed but the reality is this is not the case in cancer. And I mean we would wish – in any ideal we would wish – that the treating doctor would provide all that information to the patient so we would actually have no other additional informational needs. But reality is the health care system really intensifies and reimburse that doctors can spend one to two hours with a patient clarifying all these issues. That means the patient gets home and he has a lot of needs in terms of education.

So there are a lot of unmet needs, and the reality is information’s not available at all or it’s available in the wrong language because we have a lot of information in English but if you go to German, which is the second most spoken language in Europe, most of the information, especially the scientific material, even from German doctors is published in English. So language is an issue. Then the current model of information the patient legislation in Europe still thinks that there’s a difference between medical professionals and patients in terms of information access. So there are a couple of barriers that patients can’t access it. So where does the Internet come in there? I mean I don’t want to propose that everybody should be on the Internet, and I know this is not reality. But I know the Internet itself is completely changed the way patient advocates work because they have access to the information. Doesn’t matter whether a patient advocate in Singapore is reviewing everything that is being published in their disease, which is coming out of the American congress; today patient advocates are connected via the Internet, they have access to all that information. And they are taking up the gap of translating the information that industries are not allowed to provide and medical doctors may not be allowed to provide on the Internet, so they are taking that up.

In Initiative, in online forums, on Facebook pages, on their own webpages… and I mean I always hear about the risks of the Internet but we can complain about the Internet as much as we like; it won’t go away and patients will use it so there needs to be a collaboration of all the professionals with advocacy groups to improve on the quality on the Internet because the worst thing is that information is not available at all on the Internet, or it’s just provided by someone who has no clue about the disease but they are not being regulated because they’re outside of this highly regulated  system.

I’ve become a US citizen quite often as a patient, I’ve been participating in a number of trials, and I click ‘yes, I’m a US citizen’ and then I had access to all the information about drugs and whatever because it was not provided in Europe, and that is a bit sarcastic in something that has to change over here.

So I’ve actually been interested in your views because I know that the Internet is very controversial and there’s a lot of approaches on how we could improve the information. But I think we need to work jointly with clinicians, with doctors, with patients seeking the information on the Internet and offline. Thank you.

Carol Maddock, Cancer Communications researcher, Tenovus UK:

There were two surveys conducted as part of the Eurocoms project. One was mainly focused on patient organizations and that provisional information. And the other was from the patient prospective. And some of the interesting things that we’ve found from the surveys – some of the things Richard clarified earlier – is the type of information that was wanted by patients, my patients rather. But also when we looked at results coming back the sort of people wanted were covering the whole aspects from sort of treatments to side effects, to cancelling welfare rights information. As well as the (inaudible) information that people wanted, they wanted it in different formats so we looked at some of the tools that people were using on the Internet, people were communicating, they were using forums, chats, chatrooms, blogs, et cetera to be able to access the information. So the patients organizations tended to be delivering information via websites, generally, that was their main form of getting information out to patients. But patients themselves are actually using a more diverse range of tools to access information.

And the sort of things they were looking at were preferences available 24-hours a day, but some of the things that people were highlighting and eluding to were the quality of that information. So one of the things that we looked at in the Eurocoms perspective was making sure the information was provided that you knew who was actually providing that information, who was behind the website so there was a transparency of information. Also perhaps it’s also accredited form of website it is – who’s batched it with sort of like a help on the net type batch seal of approval. So people are actually looking on the Internet for that information there could actually say ‘look this is a quality site’, this is a key concern to patients… the quality of the information that they were accessing because there are lots of sites out there but knowing that the information they’re accessing was of quality and in different steps of information is like different stages of life from brief summary to a little bit more complex, all the research, same information doctors were accessing as well.

Selma Schimmel:

It would be timely to take a specific website – Myeloma Euronet website – offers patient information in multiple languages. So Anita Waldman, have you found a response to the information on your website… how effective has it been and what have you learned as to what information you need to enhance?

Anita Waldman, President, Myeloma Euronet:

We learned that patients are very happy that we can get immediately to the trail leader and to the user and we get more and more request from other countries so for us it’s really surprising that many requests come now from the States. I mean they have a lot of information there but the access to treatment is not so good anymore than it was before so they are looking for a new possibility to be treated and the trials, what we are providing on our website, give them clue.

Selma Schimmel:

You mentioned direct access to the investigator. How do European investigators react to patients contacting them directly?

Anita Waldman:

We are happy to help. We don’t have any problems. As long as the physicians, the trial leaders implement the on-going trials on the website it’s not allowed to do it by the companies.

END OF VIDEO