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/Node | References (n, %) | Answers |
|---|---|---|
| Question 1: In 2018 CRRAB Should | ||
| Advocacy and Education | 16, 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 Engagement | 8, 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 | ||
| Innovation | 8, 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 | ||
| Collaboration | 7, 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 Goals | 6, 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 Support | 4, 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 Access | 6, 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 | ||
| Partnership | 5, 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 | ||
| Outreach | 5, 35.71% | - Ask them |
| - Send more opportunities via email | ||
| - Continue to get the word out | ||
| - Ask | ||
| - Hold social events | ||
| Innovation | 4, 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 Families | 5, 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 | ||
| Community | 4, 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 Patients | 3, 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 | ||
| Leadership | 2, 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 Restraints | 7, 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 | ||
| Burnout | 3, 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 Understanding | 3, 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 Issues | 2, 10.53% | - Self esteem |
| - Provide support – painful memories/ active disease treatment | ||
| Conflict of Interest | 1, 5.23% | - Ethical issues or conflict of interest |
| Question 5: The purpose of CRRAB is to… | ||
| Increase Collaboration | 10, 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 | ||
| Community | 6, 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 Care | 5, 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 Patients | 4, 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 Advocacy | 4, 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** | ||