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** | ||