Stronger Together: Patient Engagement in Retinoblastoma Research

Sunday August 20, 2017

Beth White, MPH candidate based at the University of Toronto and SickKids Hospital, introduces Canada’s innovative approach to retinoblastoma research, and how patient families and survivors are invited to help set the agenda.

What does patient engagement really mean? How can we engage patients in retinoblastoma research?

Here in Canada, we are trying to unpack these questions with the Canadian Retinoblastoma Patient Engagement Strategy.

Led by the Canadian Retinoblastoma Research Advisory Board (CRRAB), our strategy has three aims:

  1. Share research results with people affected by retinoblastoma (e.g., survivor, the immediate family of someone diagnosed with retinoblastoma etc.);
  2. Include a large diverse group of people affected by retinoblastoma in research; and
  3. Promote research that is created and led by people affected by retinoblastoma.

Why are we interested in patient engagement for retinoblastoma research?

To start, we are using the Strategy for Patient-Oriented Research’s (SPOR) definition for patient-oriented research, where patients – including survivors and informal caregivers – are engaged throughout the research process.

This is important as currently research moves slowly from lab to bedside.  However, including patients in research – from creating research questions all the way to sharing exciting research results – helps create knowledge that is more likely to be relevant, adopted, and implemented.

Most importantly, having patients involved in retinoblastoma research can ultimately improve health outcomes for you and your family.

How can you get involved?

The Canadian Retinoblastoma Research Registry

The registry is a list of members in the retinoblastoma community. You can join the registry by completing a brief survey.

As a member of the registry, you can choose to:

  1. Receive updates on new retinoblastoma research results; and
  2. Engage in retinoblastoma research.

Top 10 Retinoblastoma Research Priorities

This study aims to determine the “top 10” retinoblastoma research priorities, as decided by you and others affected by or connected to retinoblastoma.

You are invited to participate in any (or all) of the three steps:

  1. Complete an online survey to share questions about retinoblastoma you’d like to see answered by research.
  2. Complete a second online survey to rank the questions gathered from step 1.
  3. Participate in an in-person workshop to ultimately reach the “Top 10” retinoblastoma research priorities.

Retinoblastoma Research Champion

If all this talk about patient engagement in research gets you as excited as we are, we have a unique opportunity for you!

The Champion role is for patients and their families to act as ambassadors of the Canadian Retinoblastoma Patient Engagement Strategy and its activities (including the registry and priority setting study).

Champions are invited to:

  1. Share personal stories through our blog, social media, and/or video.
  1. Promote the Canadian Retinoblastoma Patient Engagement Strategy and its activities to your personal networks.
  2. Promote patient engagement in retinoblastoma research by reaching out to clinicians, allied health care professionals, and more.

Canadian Retinoblastoma Research Advisory Board

Canadian Retinoblastoma Research Advisory Board logo

CRRAB is a multidisciplinary advisory board created December 2016 that includes people affected by retinoblastoma (e.g., survivors, the immediate family of someone diagnosed with retinoblastoma etc.), clinicians, allied healthcare providers, researchers, patient engagement experts and policymakers.

CRRAB’s aim is to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes.

If you would like to join CRRAB or attend the next annual meeting on December 10, 2017, please email us at:

1 reply

    Olá, sou enfermeira neonatologista, moro em São Paulo, Brasil. sou pesquisadora do Retinoblastoma, e gostaria de receber artigos sobre o assunto. achei o site muito interessante.


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