Community Advisory Board Meeting

The study updates were followed by an open question and answer session. Here are the questions that were asked by members of our CAB and the answers given by the BCC3 team:

 

1. Can women participate if they cannot come to the Oak Tree Clinic?

 

Answer: Unfortunately, not at the present as collection of biospecimen must be done in a standardized way that is currently coordinated at the Oak Tree Clinic. To have the blood analyzed for clinical markers, must be collected by someone who is certified and accredited, so it is difficult to do this outside of OTC setting. 95% of the visit takes place in a space outside the clinic, but inside the hospital.

If it’s someone who can’t get to OTC, but if there are ways we can help as a study team, we’d love to hear how we could arrange to make this possible! As times goes by, we will examine ways to see if we can find a certified phlebotomist who can go to different sites, or perhaps check if there is staff that can collect at the sites where these folks are who cannot come to OTC. Additional funding to go to a LifeLabs and then send the blood sample to us, or that LifeLabs can go to their home to minimize inconvenience to participants.

 

2. Do you also test for HPV?

 

Answer: Currently, we are not - partly because a close collaborator in BC are interested in this and are collecting this data. This is something that we were not able to cover under the funding we’ve received for the BCC3 study

 

3. How are you ensuring that you are getting the representation needed among Indigenous women, Black women, and those of marginalized genders?

 

Answer: We have learned a great deal about recruitment practices from the CHIWOS study, where we relied on the expertise and networks of our PRAs to support recruitment and retention. Our published research showed that PRAs were remarkable at increasing outreach and recruitment of Indigenous and Black women and gender diverse people[1]. We plan to continuously review our recruitment practices and work with PRAs to help guide and reach out to communities that are under-represented in the study.

A BCC3 student is collaborating with the Afro-Canadian Positive Network of BC to lead a study focused on understanding research engagement and priorities of African, Caribbean, and Black (ACB) people across BC, including barriers and facilitators to research participation. This work forms part of our commitment to continuing to build and nurture relationships with communities, including those living with and not living with HIV. We welcome input from the CAB on how we can do this better.

 

4. Are there differences in treatment exposure between women in urban and rural areas and how will we compensate for this?

 

Answer: Women living in rural areas experience treatment barriers, and thus their treatment exposure likely differs from women living in urban areas. Many women who attend OTC do, however, live outside the Lower Mainland and we will aim to recruit them into the study as well. We anticipate challenges with recruiting women not living with HIV from outside of the Lower Mainland. We are working together to brainstorm ways to decrease transportation barriers to participation and welcome guidance from the CAB on how we can do this better.

 

5. It seems that hormonal influence would be incredibly important for trans women. Is there targeted recruitment for women who have had that experience?

 

Answer: We don’t anticipate being able to enroll enough trans women to examine this important question carefully. However, we hope to contribute some data that can inform future studies.

 

The presentation and discussion of the BCC3 terms of reference were led by the CAB co-chairs Elder Valerie Nicholson and Dr. Angela Kaida. BCC3 takes an action-oriented approach to research, so it is our priority to get this research in the hands of folks who can make a difference. Consequently, our community will be defined to be inclusive and will prioritize the diverse voices of the lived and living experiences of self-identified women living with HIV.

 

The following points are the highlights from the various CAB discussions led by Elder Valerie Nicholson:

 

1. Who might be missing from our CAB?

 

There is still work to do to ensure that our CAB is representative of the community we live and work in. To do so, we must include more voices from the following groups:

• Those in Northern BC
• Health eating experts
• Doctors from John Rudy Clinic
• Trans, non-binary, gender-diverse and Two-Spirit folk and organizations such as QMUNITY and Trans Care BC

 

2. How do we as a CAB want to work together going forward?

• The duration of our project is ~10 years, with the possibility of extension. As we build our CAB, different members may leave/join at different points. We will review our membership list every two years (checking in with folks to see if they still want to be involved, if there are other ways they’d like to be involved etc.).
• We will create a listserv as a chance for us to communicate regularly with CAB members and provide study updates.
• We hope to have these annual meetings, but want to reach out to CAB to make smaller topic advisory groups, and present that at the annual CAB meetings
• Community and academic co-chairs is a great model to continue to adopt; the Co-Chairs will be reviewed annually.
• We will consider holding bi-annual webinars as a way of updating CAB on research.

 

3. What are the priorities of the CAB?

 

Through the discussion of this question, the following points were determined to be priorities:

• Integration of chronic pain into research agendas.
• Use of new research as an advocacy tool.
• Investigating hormonal influences for trans women.
• Incorporating infographics when sharing research.
• Integrate information for persons who have lived with HIV for a long time.
• Include women who have lived with HIV since birth.
• Share BCC3 knowledge and link resources created in Canada with community in Australia.
• Use strength-based approaches.
• Suggestion of developing a slideshow that could be used for recruitment, and using simplified infographics to explain the complex topics.
• SHAWNA, YouthCo, AVI expressed interest in helping to broaden recruitment and possibly work together to help reduce barriers to participation (i.e. transportation)
• How to best share basic and clinical science knowledge with community.