Understanding Patient Experiences to Shape the Future

The Emily Whitehead Foundation, in partnership with Catalyst Healthcare Consulting, has released a groundbreaking whitepaper: Amplifying the Voice of CAR T-Cell Therapy Patients and Caregivers. This report presents critical findings from our survey of CAR T patients and caregivers, highlighting their experiences with long-term follow-up (LTFU) studies and the challenges they face.

Key Takeaways from the Whitepaper:

• Barriers to Participation: Travel burdens, lack of awareness about local options, and gaps in education hinder LTFU study participation.
• Potential Solutions: Patients and caregivers strongly support innovations like telehealth, electronic health record (EHR) integration, and decentralized follow-up options.
• The Patient Voice: Patients seek a more inclusive, patient-friendly approach to LTFU, ensuring that their experiences guide policy and procedure improvements.

Why This Matters
CAR T-cell therapies represent a revolutionary advancement in cancer treatment, but their success depends on understanding patient experiences and ensuring long-term safety. By amplifying the patient voice, we aim to drive actionable changes in healthcare policies and practices, ultimately improving access to life-saving therapies.