The Retinoblastoma Research Booklet: A Catalyst for Patient Involvement in Retinoblastoma Research

Healthc Q. 2022 Apr;24(SP):61-68. doi: 10.12927/hcq.2022.26772.


Peer-to-peer recruitment efforts are important in generating interest and participation of patients as partners in research but difficult to sustain when face-to-face interactions are limited. The Retinoblastoma Research and You! booklet, co-developed by patients, researchers and health professionals, serves as a guide for patient engagement in research while retaining an element of personalization. The Retinoblastoma Research and You! booklet was developed through two virtual workshops to iterate and finalize the booklet design and content. The booklet outlines how individual patients' lived experiences and skills can influence retinoblastoma research and highlights real-world examples of patient-partnered research activities at different stages of the research process.

MeSH terms

  • Health Personnel
  • Humans
  • Pamphlets
  • Patient Participation
  • Retinal Neoplasms* / therapy
  • Retinoblastoma* / therapy