Doctors and medical staff often use medical terminology only they understand. This communication barrier can make it difficult to ascertain whether informed consent has been achieved.
To bridge the gap between medical jargon and the way the public interprets it, Research on Medical Practices (ROMP), a collaborative project between the UW and Stanford, has produced informational videos for the public. In the hope of avoiding misinterpretation on the part of the patient, ROMP aims to influence ethical guidelines in medicine, particularly randomization.
Via The Daily
Randomization — taking multiple prescription drugs that are prescribed for a specific condition and deciding at random which afflicted patients get which drug, for example — is seen as a necessary gold standard in research, and has recently spread to the clinical setting. It allows doctors to not only care for their patients, but to learn as they work. Many health care providers believe it is the most accurate way to find out which drug performs best.
In 2010, the University of Alabama published the results of a clinical study that created a stir within the medical community. The Office for Human Research Protections (OHRP), a federal agency, questioned if the study had communicated enough with patients for there to be informed consent. The case was eventually determined to be ethical, but it created gray areas in the medical room. ROMP is a reaction to these gray areas.
Over the past year, ROMP created three videos (“Research on Medical Practices,” “Informing or Asking?,” and “Which Medication is Best?”), which were shared on YouTube and the ROMP website in hopes of enlarging the audience beyond initial focus groups.
The videos simplify and elaborate on real-life medical situations through two-dimensional illustrations, defining relevant terms, and providing explanations of what goes on during each process and why it is practiced.
According to Benjamin Wilfond, the UW lead on the ROMP project, when people think of medical care, they tend to see it as a pristine process, carried out by doctors donning white coats with all the right answers.
In contrast, he also said that when people hear the word “research,” they automatically associate it with things being done to them, like an experiment, as opposed to involving them in a type of procedure.
“And so the key thing, I think, is the issue of what patients’ expectations for themselves are for seeking medical care and how comfortable they are with the idea of uncertainty,” Wilfond said.
In addition to better communication and a shared understanding, ROMP aims to serve as a liaison between the public and doctors and politicians shaping medical policy. The researchers plan on relaying information to some of the regulatory oversight bodies at the national level, like the OHRP.
“It’s nice: the real applicability of it, informing policy to be developed right now,” said Cyan James, a graduate student in public health genetics, and a ROMP primary project team member. “It really will shape how research is developed in the future.”
The researchers also hope to gauge public awareness of relevant topics and how an individual’s attitudes change in response to the information ROMP provides. It is thought that doctors and researchers tend to see a big difference between the usual medical record review and randomization, whereas patients don’t see that distinction. If the team finds this is a confirmed assumption, they hope their videos can offer a lens of clarity.
“At some level, the public understands the need for randomized trials in order to know better how treatment is working,” Sara Goering, a neuro-ethicist and associate professor of philosophy at the UW, said in an email. “My sense is that patients and/or research participants often don’t fully understand what’s written in informed consent documents, so offering a different mode of providing information is a good idea.”
Already, the team is considering another project. If it can get funding, Wilfond hopes to do more research by transforming the videos into other platforms such as text, comic strips, and audio. The project will test to see which platform informs audiences best.
In the future, ROMP hopes that a patient participating in a randomized trial understands just what that means and, if not, the team hopes a patient could easily be provided with simpler, informative videos. Although patients may have a few lingering questions, ROMP’s primary goal is that informed consent be undoubtedly achieved.
For more information, visit rompethics.iths.org.
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