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Table 7 Qualitative analysis of Chart Board Questions 1–5 at CRRAB 2018 including themes, number of references, answers and coverage

From: The Canadian retinoblastoma research advisory board: a framework for patient engagement

Theme/NodeReferences (n, %)Answers
Question 1: In 2018 CRRAB Should
 Advocacy and Education16, 40.00%- Clinicians should present debates about different treatment options
- Make content more engaging and less dry
- Walk in the santa clause parade
- Create posters for health care settings
- Link resources on the website
- CRRAB involved in schools?
- Develop pamphlet to hand out… at time of diagnosis or 1 year later
- Rb specific awareness campaign
- Awareness campaign
- WECH – International RB week
- To become a non for profit independent organization
- Raise public awareness of retinoblastoma through a dedicated week, nationally across Canada, include politicians
- For young survivors develop simple catchy RB (songs/videos/cartoons) education on some key topics or questions that they have
- Digital stories of survivors and families
- Update social media e.g., summary video, to explain what CRRAB accomplished
- Communication plan
 Increase Engagement8, 20.00%- Double (at least) the number of families connected
- Social event in September (childhood cancer awareness month)
- Become a NFP (model)**
- In 2018 CRRAB should be continuing outreach to recruit more patient and family involvement as well as researchers involvement/ recruitment**
- Identify key clinicians and researchers in each province to learn about and potentially collaborate with CRRAB**
- More broad family involvement
- Communication plan
- Engage clinicians and researchers from the sarcoma with regard to second cancers
 Innovation8, 20.00%- Prioritize a specific research project**
- Focus on the top 3 questions**
- Lobby support for DePICT project
- Develop pamphlet to hand out… at time of diagnosis or 1 year later**
- Long-term effects
- Focus on palliative care for retinoblastoma
- Focus on treating and reducing chronic symptoms/side effects of retinoblastoma (like dry eyes, inflammation)
- Start mobilizing research and patient community around top 10 priorities
 Collaboration7, 17.50%- Connect to other global RB research groups
- Become a NFP (model)**
- In 2018 CRRAB should be continuing outreach to recruit more patient and family involvement as well as researchers involvement/ recruitment**
- Identify key clinicians and researchers in each province to learn about and potentially collaborate with CRRAB**
- Palliative care – Canada and international
- Engage clinicians and researchers from the sarcoma with regard to second cancers**
- Include more researchers from graduate programs and universities
 Refine Goals6, 15.00%- Prioritize a specific research project**
- Focus on the top 3 questions**
- Clarify time commitment for working groups
- Define projects
- Establish/ define primary research projects
- Focus on another “3 goals” to consolidate group and experience success
 Psychosocial Support4, 10.00%- A social event to facilitate engagement
- Peer support groups
- Support group for recent diagnosis
- Develop pamphlet to hand out… at time of diagnosis or 1 year later**
Question 2: To have more patient and family leadership in CRRAB we should…
 Increase Access6, 42.86%- Have a coordinated schedule for committee meetings and maybe have webinar meetings
- Facilitate telecom/travel/regional work
- Send more opportunities via email
- Paid position to facilitate and feedback
- Schedule non-in person
- Multiple ways to input
 Partnership5, 35.71%- Explore co-leadership opportunities
- Offer a subcommittee for both patient and then family subcommittee
- Help patients and families understand what their role would be and why it’s important
- Paid position to facilitate and feedback
- Support
 Outreach5, 35.71%- Ask them
- Send more opportunities via email
- Continue to get the word out
- Ask
- Hold social events
 Innovation4, 28.57%- To foster new research ideas/ collaborations
- To develop eye care screening for infants, and research on possible aftercare streamlining on RB and other diseases
- Facilitate research
- Inform research and engage patients with it
Question 3: I want to be part of CRRAB working groups because…
 Benefit RB Families5, 38.46%- To add value to a specific cause
- To provide a tangible benefit
- To comfort others**
- We can make a difference in our children’s lives and those not yet diagnosed with RB
- I want my daughter to learn/see/know that we can conquer RB and live a meaningful full life
 Community4, 30.77%- To fill gaps in CRRAB
- To comfort others**
- To stay connected with other members of the RB community.
- We’re stronger together
 Include Patients3, 23.08%- Patient/family oriented research is an important emerging perspective.
- This gives patient focus to our work
- I want to be involved because patient involvement is the new impetus for patient need added to theory
 Leadership2, 15.38%- I would like part of Steering and Business development committee. I would take part as a leader.
- To keep involved in this important initiative
Question 4: I don’t want to be part of CRRAB working groups because…
 Time and Cost Restraints7, 36.84%- Time commitment
- Scheduling
- Overnight flights and non funded time is tough
- Life is busy
- (I actually do) but lack of time to share across commitments is what prevents more involvement
- Time
- Afraid of commitment
 Burnout3, 15.79%- Maybe people don’t understand what it involves or has had research participant burnout or never getting post research feedback**
- Feedback of research result “used”
- Burnout
 Lack of Understanding3, 15.79%- Maybe people don’t understand what it involves or has had research participant burnout or never getting post research feedback**
- Awareness
- Communication plan
 Psychosocial Issues2, 10.53%- Self esteem
- Provide support – painful memories/ active disease treatment
 Conflict of Interest1, 5.23%- Ethical issues or conflict of interest
Question 5: The purpose of CRRAB is to…
 Increase Collaboration10, 37.04%- RB intersect point
- Bring together patients, clinicians, researchers to initiate dialogue
- To foster new research ideas/ collaborations
- Push for research and implementation of a collaborative health care network for RB across Canada**
- Linking/ integrating efforts
- Co-investigators – patients, families**
- Ideas outside our own box
- Collaborations
- Solidify the RB group
- Concerted effort to bring patients and professionals together
 Community6, 22.22%- RB survivors network
- Connect other families
- Provide a social and informative environment**
- Concerted effort to bring patients and professionals together
- Create a community
- Networking opportunities
 Improve Care5, 18.51%- Diagnosis - > death … whole span of care
- Push for research and implementation of a collaborative health care network for RB across Canada**
- To develop eye care screening for infants, and research on possible aftercare streamlining on RB and other diseases
- Translate to include Child’s Life daily
- Help standardize practices
 Engage Patients4, 14.81%- To setup a Canadian research team with patient focus involvement
- Include patients/families in every stage of research and dissemination (Co-Investigators)
- Co-investigators – patients, families**
- Inform research and engage patients with it
 Awareness and Advocacy4, 14.81%- Raise awareness and showcase outside RB specific community
- Promote Education of RB
- Bring awareness to other medical professionals
- Provide a social and informative environment**
  1. **statement was classified under more than one theme