Case studies are a common feature in medical continuing education (CME) but these don’t typically shed light on the patient’s real-life experience. Augmenting digital education with patient voices broadens healthcare providers’ (HCP) understanding of what patients and their families are actually going through. By producing digital education sessions that feature both providers and patient speakers, we sensitize clinicians to the patient/caregiver journey, sparking practice changes that improve quality of care. 

These sessions typically involve a patient or caregiver speaking live or in a pre-recorded video as part of a panel discussion. In these short video clips, patients and their families share compelling experiences about issues ranging from grappling with their diagnosis to combatting side effects to making treatment decisions. “This helps providers understand the real experience of the patient, not just the disease,” said PlatformQ Health Senior Medical Director of Patient Education Tariqa Ackbarali.

Increasing engagement

Enhancing CME programs with patient voice is an effective strategy for helping providers retain what they’ve learned. National Organization of Rare Disorders Chief Medical and Science Officer Edward Neilan, MD, PhD noted, “when it comes to educational materials, hearing from the patient makes it much more memorable, much more engaging, and a longer lasting educational contribution.” 

The data bears this out. “We’ve seen at least 40 percent higher time-in-session for CME activities that include patient voice,” said Ackbarali.

Fostering patient-centered care

Incorporating patient voice into CME programs improves HCP competency in numerous ways, including:

• Honing communication and listening skills. Providers’ schedules are jammed, and office visits are often focused on pressing issues such as reviewing a scan or managing a side effect. To that end, providers come into an appointment ready to treat. There is little time for reflection. By sharing patient voice in CME programs, providers have an opportunity to hear firsthand the patient’s experience. 

One powerful patient story came from a recent CME session about eye diseases. A patient shared how terrified she was when her doctor told her she had age-related macular degeneration – because he didn’t explain that she wouldn’t go blind. Insights like these will often encourage providers to take a step back and consider how they present information to patients. 

“Understanding where a patient is and what they take away from a visit helps providers learn how to approach that discussion differently,” said Ackbarali. “These are learnings they can take back and apply immediately in their practice and with their team.”

• Understanding families’ burdens. In a recent pediatric neuroblastoma CME program, a mother spoke about the toll it took on the whole family when they had to continually go to an out-of-town infusion center to receive care, and how a newer FDA-approved therapy with a shorter administration time, changed their lives. Hearing about this experience encouraged providers to look beyond the options they currently provide and to consider the impact on patients and their families. 
• Aligning care around each patient’s needs and priorities. Hearing directly from patients about the physical manifestation of their disease as well as their hopes and fears brings awareness to providers about the myriad of elements that go into care. By considering the whole person and not just the disease, providers can become a partner in helping patients overcome obstacles to managing their condition and improving their quality of life.
• Breaking down barriers. The more providers are exposed to patient experiences, the more able they are to dispel assumptions about patients and understand each individual. Breaking down these barriers may open the door to new treatment approaches. For example, a provider might have two patients with similar clinical experiences but vastly different perspectives and goals, as well as different family and financial situations that may play into their treatment decision making.

In a recent NEJM Catalyst article, Mary O’Connor MD Professor of Orthopedics and Rehabilitation at Yale School of Medicine shared the impact of patient voice on her treatment recommendation for one of her patients, stating, “if I hadn’t put the clinical decision-making within the context of her psychosocial environment, I would have come up with a different recommendation. Instead I amplified her voice above all others.”

Learn more about including patient experiences in your CME programs.