Guest Expert Lidia Schapira: Making communications simple- How to talk about clinical trials
I am delighted to introduce AccrualNet's first guest expert, Dr. Lidia Schapira. Much of Dr. Schapira's research and interests are around talking with patients about clinical trials. She has a rich knowledge base of best-practices to help us with this (sometimes) challenging encounter. Dr. Schapira will add her comments to this introduction and we can ask additional clarifying questions via this site. Welcome Dr. Schapira!
Dr. Schapira's Post:
I am thrilled to participate in this conversation and share some reflections with you all. If you are reading this website it is likely that you are a believer in scientifc methods, clinical research and an active stakeholder in clinical trials. But we all need to remember that we are a self selected and relatively small group and that many of our patients have no prior knowledge or frame of reference from which to decipher the complicated terminology of such conversations.
I find it quite challenging in practice, for instance, to explain just how trials are designed to protect both the science and participants and how carefully we monitor the quality of the data and at the same time protect those involved! From the looks on some of my patient's faces I can tell you I don't always feel they are quite ready to appreciate the important details of these conversations.
So one thought I have is that we should be doing more to participate in outreach efforts to disseminate basic information about clinical trials in the community so that future patients and prospective trial participants have more time to absorb these concepts and can be better prepared if and when they face these issues.
I worked with community health workers on several projects to help them understand basic concepts and then incorporate this knowledge into their daily work. They were interested to learn and felt empowered to act as a resource in their respective communities. Many were able to address some of their own misconceptions about trials and benefited from such training. Perhaps we, the investigators, can reach out to members of the larger community through different creative venues to transmit important messages regarding the value of clinical research in cancer.
To put it in very simple terms: we need to help those who are not trained in science to understand the language and concepts of scientific thinking. Just being aware of all this may help move some conversations along in an atmosphere of mutual respect and achieve a sense of joint purpose. We could learn a lesson or two from career diplomats about cross cultural communication!
Looking forward to hearing from all of you.