17th Congress of EHA, Amsterdam, 14-17 June 2012

The involvement of rare cancer patients in clinical research

Jan Geissler – Co-founder of CML Advocates Network

How can we ensure that rare cancer patients are aware of planned and existing clinical studies?

I think one of the most crucial issues is that patients are being informed about clinical trials on rare cancers. Quite often the treating doctors don’t know about clinical trials or don’t inform patients or don’t refer them to centres of excellence so access to information might be the first bit that might help patients to find a clinical trial and consider whether they want to be part of research.

How can we make sure patients are ready to participate in clinical studies?

They need to understand what the trials are about so, in some patient-friendly language, they need to have the explanation of what the trial is about, what the risks are, what the potential benefits are, how they can join the trial, how they can leave the trial if they don’t feel that’s right. So patient-friendly information and, let’s say, communication is essential on clinical trials.

Secondly, of course, there is a lot of scrutiny in the public about research so they need to understand better what does clinical research mean, what does safety in clinical research mean. Clinical trials - am I something like a guinea pig or am I an equal partner that decides with the doctor on the participation of trials? In summary, information needs to be available in the language of patients and he needs to understand the full story.

How can rare cancer patients contribute to the development of clinical trials?

There’s a lot we’ve seen in rare diseases and rare cancers that patients have a unique knowledge about the disease, about the needs of patients and so on so there’s a lot that patients can contribute to the design of trials. So patients should already be involved at the design stage of trials to make sure that eligibility criteria, patient information and informed consent is there and later on in disseminating the information because many patients just don’t know that a trial is going on. So sometimes the patient groups are the crucial parties that actually at least give the first basic information to patients that there is something they should consider in their course and in their patient journey. But of course this requires training and knowledge in the patient community and being equal partners is not easy so initiatives like the European Patients’ Academy and Therapeutic Innovation is an initiative that will drive the knowledge in the patient community to contribute to the design of clinical trials.

As a patient and patient advocate, what experience have you had with clinical research?

The very first experience, myself, was joining a phase II clinical trial as a cancer patient. I was diagnosed with chronic myeloid leukaemia in 2001 and the only option to get access to a new innovative treatment was through a clinical trial. So I was going through the whole course of trying to understand what this all is about, trying to understand what research is, and then joining research and being in the clinical centre once a week to get the treatment. So I had a very personal experience and after that time I made the transition from being a subject of research to a partner of research so I became a patient advocate. I was starting to discuss with clinicians about up-coming research, trying to understand it, trying to give feedback, what I think would probably improve recruitment or would probably improve informed consent or would improve the availability of information about these trials in the wider patient community. So probably it was a development from being a subject to a partner in research.