Clinical trials depend on their most vital resource: the patients. A new program is working to improve their experience.
Clinical trials benefit humanity as a wholeand may have a positive impact on the lives of the people who participate in them. This is especially true when they can establish strong relationships with the investigators and staff — studies demonstratethat better communication between patients and medical professionals results in better care and less stress for both.
A lack of effective communication remains a challenge, however. “I think clinical trials are a mystery to many people,” says Suzann Johnson, associate director of patient experience at Janssen Pharmaceuticals. “We had conversations with our investigators, and I think the investigators are recognizing there may be a need to improve communication with patients.”
Susan Kesler, a nurse with 35 years of experience working as a site coordinator with Dayton Gastroenterology, Inc., agrees, “It’s really all about the patient,” she says. “We want to help you with your conditions. I think more open communication with the patient from the physician is very important.”
The key, Kesler says, is treating each patient as unique. “It’s all about, how can we help you?” she says. “The patient needs to feel safe and secure. We always give them all the information and encourage them to talk to their family. I like to tell my patients, you have to be comfortable with what you’re doing.”
Janssen sees a future where every clinical trial is patient-focused. “Communication is difficult as it is,” says Johnson. “When you add in the variable of someone who’s dealing with a disease, they don’t know what to expect in clinical research. That was the impetus behind developing the HealthCaring Conversations program.”
A patient-focused roadmap
HealthCaring Conversations is focused on ensuring participants in clinical trials feel heard and empowered. “HealthCaring Conversations provides a blueprint to a conversation that really keeps the patient at the center,” says Johnson, “while also acting as a roadmap that speaks to what the patient is interested in. It really personalizes the conversation.”
The program is a 20-minute interactive module clinicians take in their own time, modeling conversations and allowing the clinician to choose responses. “Within that span of 20 minutes,” says Johnson, “we’re bringing forward this model with three main tenets: understand, connect, and empower.”
That empowerment is crucial, she says, because the future depends on the people who volunteer for clinical trials. “The reality is that new treatments and new medicines don’t come onto the market without clinical trial volunteers.
Kesler agrees. “We want patients to understand they’re contributing to the larger picture. Down the road, this could help your grandchildren.”
Jeff Somers, [email protected]