This theme is often the sub-text behind a conference combining patients and clinicians on the same agenda, but these are usually patient-led conferences and the theme rarely makes its way into professional events. When it happens it is done very cautiously, patient contributors are usually sought at the last minute, and even though the audience feedback is almost always appreciative the repeat event does not do it any better.
Out with the old and in with the new, that was the approach taken by the Rarer Cancers Europe project when developing a training course for both patients and professionals with ESMO and ESO. It was held in early December in Milan and it was a great success.
An initial plenary session on the Saturday included talks from professionals (Jean-Yves Blay, Paolo Casali, Paolo Dei Tos, Rolf Stahel) and patients (Kathy Oliver from IBTA and Francesco Di Lorenzo of ECPC). Questions came almost equally from patients and professionals in the audience.
Separate professional and patient sessions started after lunch on the Saturday. The patient programme focussed on Advocacy Issues in Rarer Cancers. The Saturday and Sunday sessions covered clinical issues – diagnosis, surgery, oncology and research. Individual clinicians and scientists came from the professional event to talk for 20-30 minutes on a defined topic and to answer questions. These sessions were lively with lots of issues and new ideas put forward by the speakers, and plenty of challenges from the advocate audience to keep them on topic and on their toes.
Meantime the professional session looked at some specific tumour types. Patients from the advocacy group attended sessions of personal interest, often raising questions which some of the professionals attending would have liked to ask but because they did not want to look ill-informed in front of their peers were too nervous to do so.
The advocacy research session was particularly lively when Dr Paolo Bruzzi (a statistician) and Dr Paolo Casali (medical oncologist) came together to talk about probability statistics in a joint session. At one point they put forward a hypothetical trial of intercessory prayer, examined how probability would affect its results, and how it would compare with a study of a more usual medical therapy. The subject of combination therapy was raised, which caught both scientific speakers unprepared. A humorous moment. It was followed by a stimulating talk from Eric Low OBE, a very experienced advocate, looking at the social, cultural, political and medical pressures to change research models and rely more on real world evidence.
The final session on Monday looked at advocacy issues, drawing on the long experience as an advocate which some members of the group had. The presentations included case studies of activities successfully undertaken by patient advocacy groups. These were listened to carefully by a couple of senior clinicians, sitting quietly at the back.
A closing short plenary summarised the weekend. These was agreement that it was a great success. Dr Casali, who led the event, deserves congratulations. The combined audience recognised the value of a parallel conference for clinical specialists and patient advocates which sets out to make maximum use of the skills and experiences of each group for the benefit of the other group. Both the planned and the unplanned interchange of audience members according to personal choice was truly valuable.
I look forward to seeing similar structures evolve in professional events everywhere. Let conference companies take note.