What cancer advocacy groups can do for cancer patients

 “Nothing about us without us”. This was the take home message that Jan Geissler, a very engaged young patient advocate, and a CML survivor, wanted to pass on to his audience at the 8^th patient seminar, held Saturday October 9th at the 36th ESMO conference in Milan. The audience was a mixed one: patients, patient survivors, caregivers, doctors and researchers. To all of them, but in particular those who had been fighting cancer or currently are, Jan gave three main points that must be on the agenda of patient advocacy groups:

• Support and inform other patients on the best available treatments and how to access them.
• Advocate, advocate, advocate! By working in close contact with politicians and policy makers to ensure better access to treatment for cancer patients, whose time is always the crucial factor in making decisions about treatment.
• Enhance cancer research, by pushing the research agenda also on rare and more neglected cancers.
  
  

Patient groups need to be more confident about their capacity to influence health policy, Jan also added. To support his argument, he gave the example of the Forum Against Cancer Europe (FACE, http://www.forumagainstcancer.eu/). FACE is a new initiative that has been launched by ECPC in June 2010, with the goal of promoting cancer as an EU priority for health policy. One of the first events organized by FACE, on September 15, 2010, a workshop titled "Cross-border health care: a necessity for cancer patients" was held at the European Parliament in Brussels. The workshop brought together speakers of the European Commission, the European Parliament, research organisations and patients, and festured the European Commissioner for Health and Consumer Policy John Dalli. The presence of Dalli was a visible sign of the importance of the debate on patients’ rights in cross-border healthcare on the European agenda, and of the power of the patient advocacy group in influencing health care policy also at the European level.

Finally, Jan Geissler pointed out that patient advocacy groups can also help fill in the gaps of translational research in oncology. The patients' input needs to be incorporated in the design of clinical trials, as only the patient is able to identify those gaps that escape the attention of the investigators. Two prominent examples show how patients can do this, by helping setting up patient driven biobanks. This was the case of  ‘MAMAZONE’, the patient driven biobank initiated by the breast cancer patient group in Germany (http://www.mamazone.de], and of the collaborative tissue bank set up also by the patient advocacy group for GIST (http://www.gistinfo.org/).

Patient advocacy groups can also help fill in two other neglected aspects of clinical trial design, namely provide patient information on trials which may be useful for other participants, and disseminate trial results that can then be established in daily clinical practice. The dissemination of knowledge about both the possibility of participating in clinical trials, and the experience of participation, is a crucial aspect of clinical research that is often neglected. It could increase participation and help fulfilling recruitment, which is often one of the major hurdles for the completion of clinical studies.

“Nothing about us without us” is also the motto of the European Cancer Patient Coalition (ECPC),  the major voice of the patient cancer community in Europe. ECPC provides an online forum for patients to exchange information about treatment and to share the best practice experience (http://www.ecpc-online.org/). Established in 2003, it counts Jan Geissler among its co-founders.