“Most of the time when we talk about patient centricity, what we really mean is that we are going to study and understand the patient so that we can filter our expertise and share the part of our expertise that we think they need to hear more to understand, so its patient centricity with a bunch of caveats. And I think we can do better,” Roni Zeiger, MD, co-founder of Smart Patients (www.smartpatients.com), a web site that links patients to clinical trials and each other told the clinical trials industry audience at the Partnerships conference in early April.
Zeiger can use the term “we” because he practiced medicine prior to joining Google Health, and then founding Smart Patients. As first a clinician, then a person that deals with online communities, particular in the oncology space, he said his biggest “ah ha” moment was “patients in general don’t view clinical trials as experiments, they view them as treatment options.”
So, says Zeiger, right there many disconnects result based on the industry building an experiment in clinical trials, but the patient viewing trials as a treatment option.
This is important to Zeiger’s point that the industry should be looking at clinical trials from a user-centered design process. “For example, when we design a clinical trial, whose problem are we solving? What is the use case that we are trying to optimize?” asked Zeiger. He reiterated that while those in the industry may come at the clinical trial for the biotech or pharma problem, or constraints imposed by regulators, if industry considered that the product biopharm builds is for patients, the end-user, that would turn the process to a true patient-centric experience.
In the panel that followed Zeiger’s keynote, Zeiger moderated a group comprised of patients, internet organizations and industry. And one suggestion from Steven Mikita, Assistant Attorney General, Utah; Board of Directors, Spinal Muscular Atrophy Foundation, and a Patient Representative for CTTI, was completely around the topic of informed consent—the form which goes to the heart of differentiating treatment options from experiments for the patient’s understanding.
“My attorney hat tells me I get the fact that informed consents have to have certain requirements, but I’m kind of in favor of pharma using different formats to inform patients. Traditional forms of informed consent is not as successfully as using a video and an iPad, but using a video and using an iPad and then asking the patient quiz questions really does do a much more effective and efficient job in helping retention,” Mikita commented. He continued that you don’t need to “jettison” the legal and regulatory requirements, but offered the consideration of a layered approach. One that helps comprehension, and builds trust for the patient, offers the trial fundamentals toward a better informed consent process.
For more articles about Smart Patients, and patient centricity in our industry, visit http://www.appliedclinicaltrialsonline.com/appliedclinicaltrials/article/articleDetail.jsp?id=765296&sk=d9f9b9f083ea10767369911a7c8698a2