Patient-Related Issues

Guest Expert Lidia Schapira: Making communications simple- How to talk about clinical trials

Last Updated: Aug 30, 2012

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.

My best,

Lidia Schapira

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Originally posted by: Anonymous on the former AccrualNet site on Jul 01, 2010.

I couldn't agree more that better clinical trials education of those who are not trained in science is essential to improving recruitment. I know that members of patient advocacy groups who understand the clinical trials process are a great resource for getting the word out about the value of research. - Ellen Richmond

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Originally posted by: Anonymous on the former AccrualNet site on Jul 09, 2010.

As we think of new strategies for increasing awareness of clinical trials in the community it is also important to remember that we cannot expect this will immediately lead to increased accrual to trials. I think involving advocates in this effort is a very good idea because they are well informed, motivated and have the additional resource of their own life experience. They can speak with genuine authority about the difficulties involved in making the ‘right’ choice about treatment and participation in a clinical trial.
Other options include dissemination through mass media campaigns or community events, involvement of community health workers or patient navigators who are directly involved in bridging the gaps to care for those with greater needs and fewer resources.
One of the unresolved questions is who should fund these public awareness initiatives and how much to invest since there is no proof that it will lead to an increase in accrual to trials?
Clear messaging delivered by a ‘trusted’ community member may work better than anything else but will be hard to accomplish. I’d be interested to hear about local initiatives – what works and what doesn’t!
Lidia Schapira

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