15th Congress of the European Hematology Association (EHA), 10—13 June, 2010, Barcelona

Interview with Jan Geissler (European Cancer Patient Coalition)

The role of patient advocacy groups and the efforts being made to help improve the spread and accessibility of information for patients

My name is Jan Geissler, I’m the Director of the European Cancer Patient Coalition, which is a coalition of about 300 cancer patient groups in 42 countries all across Europe. We present the voice of all cancer patients from the very common to the very rare on one hand in the European healthcare policy, so when laws are being made in Brussels we are representing the interests of patients. On the other hand we’re helping our member organisations, all across the countries, to build their capacity and to lobby their governments and to build advocacy organisations in their countries.

Was the advocacy session at the EHA Congress a success?

It was fantastic because it was really historic for us because patients have not been involved in the scientific programme of the European Haematology Association’s Annual Conference and this is why it was really fabulous. We already had a large room but it was so packed that people had to sit outside to listen to what was being discussed and we had the topic of access to clinical trials, which is of core interest to cancer patients because research is so important for us. We had a perspective from a patient advocate, we had a perspective from an investigator who’s running trials, and from an industry representative and we saw a lot of questions coming from the audience. So all in all, for me it was the start of a very fruitful dialogue between everyone involved in clinical trials.

What needs to be done to improve patient communication?

At the moment it’s very difficult to find information about clinical trials because what people get from the normal press are usually the difficult stories but not the successes of cancer research and the progress. And even though there is still so much to do because for many cancer patients there is just not a suitable therapy today. We need more clinical trials and people just are not aware about it. And there has been some progress, we’ve been lobbying from the side of the European Cancer Patient Coalition for years to make it more transparent where trials are being run, whether they are still open and taking patients, recruiting patients, and what the criteria are to go into that trial. And so we’ve been trying to, on the one hand influence the policy that this is more transparent and that there’s a single place where people can go and find about trials, and also to inform patient groups and patient representatives to understand how clinical research works and what they need to explain to patients that they feel more confident in joining a trial.

Can informed consent forms be made more user-friendly for patients?

The informed consent form is something difficult because it was set up to protect patients and it’s absolutely necessary because it requires before a patient enters research that he knows about the risks and benefits and side effects and how it affects his life and what his rights are. So in general this is a very important step forward but of course because it’s a legal document it tries to protect the patient but also the industry, the sponsor, the investigator, the clinician, the ethics committee, so they are trying to protect all parties which makes it a legal document. That means that it’s sometimes very difficult for patients to understand what it’s all about, it’s sometimes a fifteen, twenty page document. So what we’re saying, because on one hand it’s important to have that, we’re saying on the other hand it should be a summary for patients that they can understand which has been worked out in collaboration with patient groups because we know what the questions are and we can help that these questions are being addressed when patients are considering joining a trial.

Is this a difficult time when patients are diagnosed?

Yes, absolutely, because when cancer patients are diagnosed, they’re on an emotional rollercoaster ride and they are completely put into a very difficult emotional situation. So in that time within days to decide also to join clinical research and not understanding the risks and benefits is very difficult. It’s a difficult situation also for the doctor to explain it in the very short timeframe which he has. That’s where patient groups come in because very often we are the mediator between what patients hear in the doctor’s appointment and what they need to understand later on and go back to the doctor with more detailed questions or more targeted questions. That’s what patient groups do in their day to day work.