Personalizing Patient Communication in Oncology
Presenters:
Daniella Landau, CEO, MyCareCompass Health, Linda Fleisher, PhD, MPH, Fox Chase Cancer Center/Temple Health
Conference:
ASCO Direct™ Washington DC 2024
Introduction: A New Model for Patient Communication
Effective communication with the patient is a cornerstone of oncology care, yet significant gaps persist in delivering effective, personalized cancer education. Daniella Landau and Dr Linda Fleisher highlighted these challenges in their recent presentation at the 2024 ASCO Direct™ Washington DC conference, and outlined how innovative tools, such as the MyCareCompass platform, are helping to transform patient education in oncology. “This is about getting the right information, to the right person, at the right time,” suggested Dr Fleisher. Ms Landau also shared insights from over 150 interviews with oncology leaders nationwide, identifying widespread issues with traditional models of oncology education. Some of the key roadblocks identified included low health literacy for the general population, technological divides, and fragmented approaches to patient education.
Current Challenges for Patient Communication
1. Patient Diversity and Health Literacy
Patients with cancer present from a wide range of linguistic, educational, and cultural backgrounds, which influences their ability to understand complex medical information. For example, only 12% of Americans have proficient health literacy, and oncology materials often require a 10th–12th grade reading level, compounding accessibility issues. “Language barriers are among the top challenges,” Ms Landau noted. Additionally, underserved populations and older adults face unique obstacles, which creates a one-size-does-not-fit-all scenario for patient communication.
2. Technology Gaps
While digital tools can help to improve education, many patients lack access to reliable technology. As one healthcare executive observed, “Post-pandemic, people are not reading things. With a full stack of papers, most patients will throw it away.” It was also noted that paper remains the default media for most institutions, but materials are often overwhelming and poorly timed. Ms Landau shared the striking example of a 115-page “Breast Cancer Journey” PDF, that is distributed at the time of diagnosis—a moment when patients are least able to assimilate and process information.
3. Caregiver and Family Involvement
Family members and caregivers are integral to the patient’s journey, but they may often feel excluded. It was noted that often patients will remember only about 30% of what is conveyed in appointments, which in turn can lead to gaps in communication with their provider and support system. “It’s whispered down the lane,” from person to person, as one provider noted which can lead to significant misinformation.
4. Provider Time Scarcity
It was also noted that oncology care teams are increasingly stretched, with providers struggling to manage administrative burdens. Nurses, in particular, were noted as having to juggle numerous responsibilities, leaving little time to maintain or personalize educational resources for their patients.
Desired State: Tailored, Just-in-Time Education
The presenters proposed a future wherein appropriate patient education would be aimed at meeting three essential goals:
Reducing the overall burden on providers.
Empowering patients with actionable, literacy-friendly information.
Addressing individual preferences for language, timing, and optimal means of delivery.
“The better informed and empowered patients are, the better the outcomes will be”
MyCareCompass: Transforming Patient Education
Ms Landau introduced MyCareCompass, a platform designed to deliver “bite-sized”, personalized educational content to patients and caregivers alike. Dr Fleisher described it as “the glue between appointments, keeping the relationship and the process moving forward.”
Core Features of MyCareCompass:
Multi-Channel Delivery: Patients receive content through email, text, or paper, depending on their individual preference.
Interactive Modules: Topics range from chemotherapy to genetic counseling, with materials created in collaboration with oncology experts.
Real-Time Analytics: Engagement data helps institutions to further refine their communications approach to meet patient needs more effectively.
Case Studies and Implementation
1. Port Insertion Module
The presenters noted experience from a program at Fox Chase Cancer Center which piloted MyCareCompass with a module addressing port insertion—a procedure that can cause significant anxiety for patients. An institutional review board (IRB)-approved evaluation found that patients using the module were better prepared and experienced reduced anxiety.
2. First Consultation Module
The presenters also noted the First Consultation Model, launched in April 2024, which supports new oncology patients by providing:
A care team discussion guide.
Checklists for medical records and forms.
Instructions for setting up patient portals like MyChart.
Patients received information in a sequence of emails and texts leading up to their appointments.
Early results were promising showing that:
62% of surveyed patients reported high satisfaction with the materials.
85% felt confident in the care they would receive.
“This module helps patients navigate their first exposure to specialty care, ensuring they arrive prepared,” Dr Fleisher said.
Impact and Feedback
The presenters noted that, thus far, the MyCareCompass approach has reached over 10,000 cancer patients, with benefits including:
Improved patient preparedness.
Enhanced efficiency during appointments.
Reduced anxiety for both patients and caregivers.
Survey comments and feedback obtained from actual patients included:
“The care team guide was key to having an informed and productive conversation.”
“This reduced my fear and anxiety about starting treatment.”
Future Directions
Looking ahead, Ms Landau and Dr Fleisher noted their aim to expand MyCareCompass with additional modules addressing topics such as clinical trials and melanoma surgery. They noted that the platform’s scalability makes it adaptable to various institutions and diverse patient populations. “We’re always looking for partners to pilot new content,” Ms Landau emphasized, inviting collaboration with both providers and institutions.
Best Practices for Patient Communication
The presenters closed with some actionable recommendations for improving oncology education:
Use Multiple Formats: Combine digital and physical materials to meet diverse patient needs.
Keep Content Bite-Sized: Avoid overwhelming patients with too-lengthy resources.
Update Regularly: Review the materials every 2–3 years in order to be reflective current clinical practices.
Engage Caregivers: Ensure the caregiver also receives accurate, accessible information alongside the patient.
“Prepared, informed patients are better equipped to participate in their care, leading to improved outcomes for everyone involved.”
Conclusion
Ms Landau and Dr Fleisher’s presentation underscored the current need to fundamentally rethink patient communication in oncology. By leveraging tools like MyCareCompass, institutions can bridge longstanding gaps, empower patients, and ultimately improve cancer care outcomes.
If you have further questions or would like to pilot MyCareCompass, please contact Daniella Landau at dlandau@arches.health or Dr. Linda Fleisher at linda.fleisher@fccc.edu.