The patients’ voice. A summary of patients’ experiences at the 2013 GRAPPA annual meeting.
| Summary |
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| Sitting in a plenary session of a medical conference for the first time can be insightful to patient attendees (i.e., learning about the issues, available therapies, new drugs being developed); however, for some patient attendees, the material presented can be somewhat beyond their initial comprehension. At GRAPPA, we all came from diverse backgrounds and with varying levels of knowledge of medical terminology. Consequently, patients only minimally participated in the general discussion after presentations. However, at the very least, our visible, physical presence in the audience served to remind researchers that they should consider what questions they need to ask us. |
| Patients became more satisfyingly involved in the breakout groups. With smaller numbers, the situation automatically became more personable and interactive, discussion questions more specific and directed. Thankfully, moderators gave explanations as needed; thus, reliance on previously acquired medical knowledge was not so necessary. We felt valued when asked about our perspective. We could appreciate that the team needed to analyze the problem from all angles: not just from a researcher’s point of view, but from ours and society’s as well. If feasible, starting the meeting with a breakout group for patients might help patient participants achieve a level of comfort earlier. |
| Amazingly, research physicians now communicated with us as people, as opposed to recognizing us only as objects of research. We do indeed have a large stake in the quality and direction of the ongoing research and we can fill in knowledge gaps, particularly if we are asked directly. |
| For all of us at GRAPPA 2013, we found attending this conference to be rewarding and worthwhile. Since almost everyone around us was friendly and inclusive, we felt very welcome. Overall, patient attendees were very happy with the group’s initial contributions. |
GRAPPA: Group for Research and Assessment of Psoriasis and Psoriatic Arthritis.