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EMPOWER Retinoblastoma: Engaging Patient Partners in Solving the Top 10 Priorities for Eye Cancer Research in Canada

Ivana Ristevski1, Jill Robert2, Richelle Baddeliyanage3

  • 1A parent in research in the Department of Ophthalmology and Vision Sciences and Child Health Evaluative Sciences Program at SickKids and a member of CRRAB in Toronto, ON. Ivana can be contacted at ivana.ristevski@sickkids.ca.

Healthcare Quarterly (Toronto, Ont.)
|April 25, 2022
PubMed

Insights

Patient input is crucial for research, but implementing priorities is hard. Canadian Retinoblastoma Research Advisory Board (CRRAB) used co-produced tools to share top retinoblastoma research priorities globally, inspiring action.

Area of Science:

  • Ophthalmology
  • Oncology
  • Health Services Research

Background:

  • Integrating patient, clinician, and researcher perspectives into research priorities is essential but challenging.
  • Translating identified research priorities into actionable projects requires targeted dissemination strategies.

Purpose of the Study:

  • To raise awareness and promote action on the top 10 Canadian retinoblastoma research priorities.
  • To share these priorities internationally to mobilize global research efforts.

Main Methods:

  • Development of diverse dissemination tools and processes by the Canadian Retinoblastoma Research Advisory Board (CRRAB).
  • Co-production of resources with patients to ensure relevance and engagement.
  • International sharing of the top 10 retinoblastoma research priorities.

Main Results:

  • Successful creation and deployment of co-produced dissemination materials.
  • Effective international outreach to stakeholders involved in retinoblastoma research.
  • Mobilization of action towards addressing the identified research priorities.

Conclusions:

  • Targeted, co-produced dissemination is effective in actualizing research priorities.
  • International collaboration can accelerate progress on critical health issues like retinoblastoma.
  • Patient engagement is key to driving meaningful research agendas.

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