Editor’s note: CVCT CardioBrief seeks contributions from a broad spectrum of perspectives. We are particularly interested in soliciting the perspectives of patients who participate in clinical trials. The following post was written by three patients who have participated in numerous clinical trials and who have sought to share their experience with the clinical trials community at the global CVCT forum. This post makes clear that there are significant barriers to effective communication between patients and medical professionals.
We were honored to be invited to share our experience as patients in clinical trials. The invitation was recognition that patients’ voices matter; this has incredible value for us and represents an important opportunity.
Contributing to the patients’ view at a medical conference is an important opportunity to serve and contribute to clinical research.
However, there is a major obstacle to our ability to participate at these conferences. As we do not have a scientific background, we are not familiar with the medical language spoken. Imagine yourself having discussions with people talking another language, and then being asked for your opinion on the subject under discussion. At the very least, it is uncomfortable.
For us, the medical language spoken at conferences is so specialized, the commonly used abbreviations so meaningless, the content of the research so remote from our world, that it is hard to understand. In short, it is difficult, and in some cases impossible, for us to figure out what they are talking about.
As experienced patients we have, over the years, undergone many, many procedures, even a heart transplant, so we are not unfamiliar with medical jargon and terminology. However, our experience is not enough to help us decipher the exceedingly complex language and concepts common at medical conferences. This is not a problem specific to just the CVCT Forum or even medical conferences, but is in fact widespread in nearly all instances of communication of complex medical/scientific information between professional insiders to patients and consumers.
We are told that our opinion is valued and we are asked to comment on the content of the conference but this is often impossible in these circumstances. This situation bothers us, because we dearly want to participate and to contribute to the proceedings. The key to achieving this goal is prior preparation and education.
We have a few concrete suggestions for how this problem might be tackled. First, in advance of the conference patient participants should be given the complete agenda of the sessions in which they will be contributing, so proper preparation can be done on the subject. The patients should also be provided beforehand with background information, preferably in language accessible to a layman. This process could also include providing to the patient participants a mentor who can help outline beforehand the complexities of the topic under discussion. (The benefits of this relationship might well extend beyond a single conference.) The mentor might also introduce the patients to other leaders in the field, potentially leading to valuable exchanges of information and knowledge for a wide variety of doctors and patients.
We welcome more ideas. Our goal is to strengthen the partnership between researchers and clinicians and patients like ourselves. We appreciate the unique challenge of providing the perspective of patients to the clinical trial community. We are grateful for the opportunity to both contribute and learn together.
By Denis Janssen, Greg Merritt and Patricia Vlasman