INTEGRATING THE PATIENT’S VOICE INTO RESEARCH DESIGN

The NFAC Research Subcommittee’s objective is to establish a two-way communication channel between caregivers, individuals with neurological conditions, and neuroscience researchers at Boston Children’s Hospital. Our commitment is to integrate the patient’s voice into research, ensuring that treatments and interventions genuinely address the needs and concerns of those impacted by neurological conditions. We are dedicated to embracing a diverse range of perspectives and backgrounds.

FEEDBACK SESSIONS

The committee’s signature feature is the feedback session. These sessions allow committee members to offer direct input to research investigators, ensuring the patient voice is integrated into research design. Investigators receive invaluable feedback on survey questionnaires, recruitment flyers, diverse perspectives, language, cultural sensibilities, and accessibility to clinical trial locations just to name a few . Feedback sessions take place 3-4 times per year.

Subcommittee Role

• To articulate patient/family priorities and quality of life concerns to investigators.
• To actively participate and provide feedback, during investigtor feedback sessions, about research design, patient communication, and patient recruitment strategies.
• To read and comment on drafts of reserach surveys, interviews, patient communication and participation, and consent forms.
• To brainstorm with us improving participant diversity in research.

By fostering this collaborative environment, we aim to bridge the gap between clinical research and patient experience. This approach not only enhances the relevance and impact of our research but also empowers patients and caregivers to play an active role in shaping the future of neurological care.

The subcommittee, launched in January 2022, is looking to expand its membership. To qualify, members must be patients of the Boston Children’s Hospital Neurology Department and join the larger Neurology Family Advisory Council.