The annual Retinoblastoma Research Symposium once again proved to be a success! Although the COVID-19 pandemic precluded us from meeting in person we were able to gather virtually on January 16, 2021 to grow our community and continue building momentum for patient-oriented retinoblastoma research in Canada. The symposium gathered many stakeholder groups including retinoblastoma patients, survivors, family members, advocates, researchers, and health professionals to learn, connect, and discuss the future of retinoblastoma research.

Keynote Presentation

Rachel E. Martens

The first session of the day was a keynote presentation by Rachel E. Martens, Family Engagement Facilitator at CanChild and parent-in-research. In her engaging presentation Rachel talked about finding meaning through research collaboration. Rachel spoke of her experience as the parent of a child with medical complexities and how becoming a research partner was an extension of her family’s care experience. The presentation spoke to the importance of patient partners outlining goals they wish to achieve through partnership in research and developing an understanding of how their engagement fits into the framework of their life. She also discussed the role of researchers, in developing engagement opportunities that are accessible to patients and fostering open communication with partners. Rachel’s presentation included tips for all stakeholder groups, energizing and motivating listeners to actively engage in the activities of the symposium and CRRAB endeavours throughout 2021.

CRRAB Annual General Meeting

The symposium then moved onto the foundation of the event, the 5^th CRRAB Annual General Meeting. The meeting highlighted our group’s purpose and structure, then reviewed our 2020 goals, challenges, and accomplishments.

To begin discussing CRRAB’s goals for 2021 we used an online interactive whiteboard tool to gather feedback from the CRRAB membership in the virtual setting. Suggestions were then organized and discussed to develop specific goals that align with the aims of the Canadian Retinoblastoma Patient Engagement Strategy:

1.  “How can we share research results with people affected by retinoblastoma?”

1. Create 1 video plain language summary to be shared by social media in an interactive post.
2. Create 4 written plain language summaries (one per quarter) to be shared by social media through 4 unique posts, quarterly newsletter, and housed on the CRRAB website.
3. Develop a “Cup of Tea” virtual journal club as an opportunity to discuss research in plain language (one patient with one researcher or health professional guide an informal discussion on a topic in retinoblastoma research).  

2.  “How can we include a large and diverse group in CRRAB?”

1. Recruit a Francophone patient and clinician to join CRRAB.
2. Enroll one patient family from Quebec to the Canadian Retinoblastoma Research Registry. 
3. Enroll 12 newly diagnosed families to the Canadian Retinoblastoma Research Registry. 
4. Enroll 10 additional families to the Canadian Retinoblastoma Research Registry. 

Everyone is encouraged to contribute towards actualizing these goals. Attend a Regional Working Group meeting to see how you can contribute.

Regional Working Group Meetings

Central/East Coast Working Group meets on the 2nd Wednesday of each month at 12:00 PM Eastern Time.

West Coast Working Group meets on the 2nd Saturday of each month at 12:00 PM Eastern Time.

Email retinoblastoma.research@sickkids.ca for information on how to attend this meeting or to learn how you can contribute offline.

Child Life Session

Morgan Livingstone, CCLS

During the Child Life Session at this year’s Retinoblastoma Research Symposium children were guided through a specialized activity while adult attendees were welcome to attend to learn more about child life and the importance of effective coping through play, preparation, education, and creative self-expression activities by Certified Child Life Specialist Morgan Livingstone.

In the session children were led through the creation of a set of distraction cards. When children undergo procedures a distracting activity or toy can help in coping. These toys can reduce stress and increase cooperation in children coping with illness. Distraction cards are a fun way to for children to challenge themselves by finding specific items, images, and pictures, and can be used during checkups and procedures at the hospital or clinic. Children were able to create two distraction cards, one with shapes and images to find items using vision and another with textured stickers and foam shapes to find items using touch. These pages full of fun are a positive game/distraction for children to use at home or to take to appointments to challenge themselves, their family members, and their medical team to find it!

While not able to gather in person this child life activity was designed to be an immersive experience for the children despite the virtual setting and was specifically tailored to engage children with visual impairments. Find instructions to make your own distraction cards here.

An important part of all child life activities is an engaging (and sometimes silly) story time. “The Book With No Pictures” by B.J. Novak is a simple yet imaginative book that made all of us laugh. This book really has no pictures, and relies on mischievous text to make the reader say silly sounds, in ridiculous voices, even if the words say…BLORK or BLUURF, to the delight of all the listeners. This book was selected as a part of the child life activity to focus on fun with words, not images, in telling a delightful story for kids of all ages.

Networking Session

To offset the loss of personal connection that we normally see at our in-person symposia this virtual event included a specific networking session where members were invited to join a breakout room based on their interests (with topics of parenting, survivorship, and the unilateral retinoblastoma experience highlighted) to have casual conversation with those of shared interests. This session allowed patients, clinicians and researchers to meet in small groups to strengthen the bonds of our community.

CRRAB Tools Breakout Sessions

In the first breakout session of the day members were broken up into small groups to discuss the various tools CRRAB uses to achieve our goals.

Canadian Retinoblastoma Research Registry Breakout Session

Jill Robert & Kaitlyn Flegg

Introduction:

In 2016, we developed the Canadian National Retinoblastoma Patient Engagement Strategy. Patient engagement in research shifts the idea of a patient (i.e., individuals with personal experience of retinoblastoma and their informal caregivers) from a passive participant to a meaningful and active partner in all aspects of the research process. But, without patients, there can be no patient engagement in research. Finding a diverse, representative group of retinoblastoma patients is at the cornerstone of having an effective national patient engagement strategy. To address this, we developed the Canadian Retinoblastoma Research Registry.

Summary of Session:

During the session we discussed the following opportunities for expanding the Canadian Retinoblastoma Research Registry:

1. Inclusion of researchers and health professionals
   • Feedback from breakout session participants: The inclusion of researchers and health professionals would align the Canadian Retinoblastoma Research Registry with the Canadian National Retinoblastoma Patient Engagement Strategy and reflect all stakeholders involved.
2. Inclusion of international patients, researchers and health professionals
   • Feedback from breakout session participants: Expanding the scope of the Canadian Retinoblastoma Research Registry is a positive way forward, provided the objective remains clear throughout the expansion.
3. Enhanced branding
   • Feedback from breakout session participants: The Canadian Retinoblastoma Research Registry title may be misleading or intimidating. Several other titles were suggested including terms like partnership, collective and group.

Next Steps:

To get involved in the expansion of the Canadian Retinoblastoma Research Registry, attend the monthly Regional Working Group Meetings hosted by CRRAB.

CRRAB Social Media Breakout Session

Michelle Prunier & Roxanne Noronha

Introduction:

The purpose of CRRAB Social Media is to engage with a multidisciplinary group of stakeholders (including those affected by retinoblastoma, researchers, health professionals, researchers, and advocates) to increase participation in CRRAB and enrolment in the Canadian Retinoblastoma Research Registry. When reviewing responses from members of the Canadian Retinoblastoma Research Registry we have discovered that social media is a leading method in which members learn about CRRAB and patient-oriented retinoblastoma research in Canada. Over the last few years CRRAB has assembled a small team of volunteers to continually develop content for our social media platforms (currently Twitter, Facebook, and Instagram) so that we can continue to develop a diverse group of retinoblastoma patients interested in being active partners in research.

Summary of Session:

During the session we discussed the following topics to improve the CRRAB social media strategy:

1. Using social media in novel ways
   • Feedback from breakout session participants: Incorporating more video content and increasing use of stories function on Instagram to improve audience interaction.
2. Increasing online engagement with social media content
   • Feedback from breakout session participants: Optimize hashtag usage, target posts to populations per platform, coordinate with external groups to share our content.
3. Improving translation from post engagement to enrolment in the Canadian Retinoblastoma Research Registry
   • Feedback from breakout session participants: Increase amount of posts about the Canadian Retinoblastoma Research Registry.

Next Steps:

The CRRAB  Social Media Team is actively incorporating these suggestions in our strategy for 2021. If you would like to join our team of volunteers please contact retinoblastoma.research@sickkids.ca and please continue to share CRRAB posts to your social media accounts!

Retinoblastoma Research Booklet Breakout Session

Leslie Low & Ivana Ristevski

Introduction:

Due to the restrictions of COVID-19 the usual methods of discussing retinoblastoma research in-person are no longer available. As a result CRRAB needed to develop alternative options to reach our goals of recruiting new and current retinoblastoma families to the Canadian Retinoblastoma Research Registry. To solve this problem, the CRRAB Regional Working Group members have been working to create a pamphlet to introduce retinoblastoma patients, survivors, and family members to the benefits of patient engagement in retinoblastoma research. Through discussion at the Regional Working Group Meetings over several months, the idea of a pamphlet transformed into a booklet with not only information about patient engagement, but also about CRRAB and personal stories of patient partnership in retinoblastoma research.

Summary of Session:

During the breakout session, we reviewed the current state of the Retinoblastoma Research Booklet project and the following topics:

1. What worked and what doesn’t in the current draft
   • Feedback from breakout session participants: Positives include patient stories and use of plain language but there is a need to improve the overall design and colour scheme, and include images of diverse patient groups.
2. Methods to widely distribute the booklet upon its completion
   • Feedback from breakout session participants: Build relationships with external organizations and service providers to share the booklet broadly.

Next Steps:

We were awarded the Ontario SPOR Support Unit EMPOWER award to complete development of the Retinoblastoma Research Booklet and get it into the hands of as many retinoblastoma patients, survivors, and family members as possible. If you are interested in helping with this project, attend the monthly Regional Working Group Meetings hosted by CRRAB.

CRRAB Website Breakout Session

Serge Dorna & Dr. Ashwin Mallipatna

Introduction:

The purpose of the CRRAB website is to achieve several goals using one uniform tool. The site informs the public of upcoming CRRAB events and ongoing research, and aims to recruit patients to the Canadian Retinoblastoma Research Registry. The website has a blog to feature stories and updates from the broad CRRAB membership and also provides a central location to organize the efforts of the CRRAB Regional Working Groups. The website has evolved from a simple blog format to a central repository for the CRRAB membership. Over the past few years our team has used an iterative process to add new sections and improve the site, reflecting the growth of CRRAB.

Summary of Session:

The website breakout session provided participants with an open forum to make suggestions to improve this tool. Suggestions were given to improve the use of the website by all stakeholder groups; these suggestions included:

• Improving accessibility functions (e.g. adding the option to easily change font size).
• Addition of a section displaying how research conducted has been translated to real world improvements in patient outcomes.

Next Steps:

These suggestions are being incorporated into the work plan for website improvements. To get involved in these efforts please contact retinoblastoma.research@sickkids.ca.

Priority Research Project Breakout Sessions

In the next breakout session members were broken up into small groups to learn more about projects under way addressing three of the Top 10 Retinoblastoma Research Priorities.

Retinoblastoma Research Priority #1: Early Diagnosis Breakout Session

Marissa Gonzalez & Dr. Ashwin Mallipatna

Introduction:

Retinoblastoma Research Priority #1 asks, “How to increase early diagnosis of retinoblastoma (i.e. decrease age or stage at diagnosis)?” The importance of this priority is clear as earlier diagnosis of retinoblastoma will lead to better outcomes and require less intensive treatment.

Last year, at the 2020 Retinoblastoma Research Symposium members of a research workshop took a deeper look into this priority and outlined the steps required to obtain a retinoblastoma diagnosis in Canada. The group then discussed the barriers that could appear at each of these steps that could delay the process of getting a diagnosis for a child. The members of this workshop then formed a Working Group, comprised of patients, researchers and health professionals who have worked throughout the last year to develop three projects designed to assess and address the barriers to early diagnosis of retinoblastoma.

Summary of Session:

After presenting a brief update on the three projects currently underway this session welcomed members of the initial Priority #1 Working Group and others interested in early diagnosis to go “back to the drawing board” where participants once again reviewed the retinoblastoma care pathway and brainstormed possible barriers between onset of retinoblastoma, detection of first signs of retinoblastoma by parents/family members, detection of retinoblastoma by general healthcare providers, and confirmation of retinoblastoma diagnosis by an eye specialist.

Suggestions from this session include:

• Expanding thoughts beyond the pathway initially described to create awareness for families with a known history of retinoblastoma and those that manage their care so that future parents are aware of the options available to them during family planning.
• Develop training so lessen the gap between primary physician knowledge surrounding retinoblastoma and referral to specialized care.
• Focusing on global collaboration so that efforts underway in other countries can be expanded on or replicated in Canada.

Next Steps:

These suggestions and the initial projects generated around this priority continue to be developed by the Priority #1 Working Group which meets regularly to advance these projects. The next Working Group Meeting will be held during the third week of March. To join us please contact retinoblastoma.research@sickkids.ca.

Retinoblastoma Research Priority #3: Psychosocial Support Breakout Session

Leslie Low & Kaitlyn Flegg

Introduction:

Retinoblastoma Research Priority #3 asks, “How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents and families (at diagnosis and beyond)?” In order to answer this research priority, we must first understand the psychosocial needs of retinoblastoma patients, survivors and their families. The Canadian Retinoblastoma Research Advisory Board selected this priority to focus on first.

A study and grant proposal were co-developed by a Working Group comprised of patients, researchers and health professionals in 2018-2019. The grant proposal was submitted to two competitions but was not selected for funding. Results of a third funding competition are pending.

Summary of Session:

When the proposed study is funded, participant recruitment will be essential to accurately characterize the psychosocial needs of retinoblastoma patients, survivors and their families. During the session we discussed facilitators and barriers to recruitment and retention of patients and patient partners.

Suggestions from the brainstorming session included:

• Communicate with the community about the study in an engaging and jargon free manner.
• Convey the value of the study to patients including: (i) benefits to other families and survivors and (ii) opportunity to give back and (ii) chance to share their story.
• Make sure the study is: (i) accessible, (ii) convenient and (iii) includes compensation (if possible).
• Consider establishing champions or stakeholders across the country to advocate for the study.
• Recruit using diverse methods including: (i) other organizations (i.e., Canadian Retinoblastoma Society), (ii) social media, (iii) healthcare providers including ocularists, and (iv) in person discussions.

Next Steps:

Upon receipt of funding, the original Priority #3 Working Group will resume meeting to plan for study implementation. Updates on funding decisions and Priority #3 Working Group meetings will be shared at the monthly Regional Working Group Meetings hosted by CRRAB.

Retinoblastoma Research Priority #9: Pathway of Care Breakout Session

Alena Vincent & Ivana Ristevski

Introduction:

Retinoblastoma Research Priority #9 asks, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up to retinoblastoma patients and families?”

Based on the “Get Well Maps” concept the Retinoblastoma Journey Map is a patient-centred pathway of care developed with the help of retinoblastoma survivors, parents, researchers, and health professionals. The Retinoblastoma Journey Map is currently being tested with a small group of families over the course of six months via a quality improvement project at SickKids.

Summary of Session:

At the time of the symposium, we had yet to reach the project’s recruitment goal and had encountered many families who had declined participation. During the breakout session we asked for feedback on our approach when asking families to participate.

Suggestions from this discussion included:

• Presenting the map as a simple activity that is easy to complete and not time consuming.
• Telling families that the map can be used for those at any stage of their retinoblastoma journey.
• Highlighting that the map can be used to save information about their journey to then share with others.
• Explaining that the map is an engaging activity for all family members and children can get involved in the process as well.

During the session participants were also asked to brainstorm on how patients, researchers, and health professionals could be involved in interpreting the results of the project.

Suggestions from this brainstorming activity included:

• Starting with a trust-building activity between the groups.
• Sharing plain language summaries of relevant articles to help all participants have a good foundation of knowledge prior to the interpretation of results.
• Asking stakeholder groups to interpret results separately then bring all the thoughts together as a larger group to discuss the interpretations.

Next Steps:

Since this breakout session, feedback was utilized when contacting the remaining families and the project’s recruitment goal has been met. The results of this quality improvement project will be available by early Fall. If you are interested in participating in the discussion of the interpretation of the results, stay tuned for further updates at the monthly CRRAB Regional Working Group Meetings and via our quarterly newsletter.

Thank You

We would like to thank everyone who attended the 2021 Virtual Retinoblastoma Research Symposium. Without your active involvement we are unable to build patient-oriented retinoblastoma research in Canada.