Introducing our CAB

The 10,000 Families Study is thrilled to announce the launch of our new Community Advisory Board!

The CAB has long been part of the vision for 10KFS. This vision includes being more inclusive and equitable. Our family-based study aspires to represent a community that is constantly changing, made up of people of different beliefs, family histories, origins, cultures, lifestyles, and abilities. All of those factors influence the health of the state as a whole. Understanding different communities' challenges to participation and spreading the benefits are also part of our discovery adventure.

The 10,000 Families Study concentrates on following the health of participant families over time to learn about protective factors and risks that affect communities' health. Over time our findings will inform healthcare and public health, and support communities to improve the health of their members.

We invite families to participate and want to make sure that they feel welcomed, respected, and supported in the process of participation. We are committed to finding ways to work in conjunction with the community to accomplish those goals. Shortly after the pandemic of COVID-19 hit in Spring 2020, we concentrated on:

• Working on the initial nuts and bolts of how the board would operate;
• Identify which communities were key to include, and which people to invite to advocate for their communities'  needs

After many conversations, information search, and planning, we finally issued invitations. By Spring 2021 our inaugural CAB finally launched. Its first meeting was on March 30th.

We want to share with you this interesting process. We are open to your critical eye and invite you to reach out with feedback!

Why have a Community Advisory Board for 10KFS?

1. Engage and build trust with communities
   Members are liaisons and advocates that help their community to be included, respected, and welcomed. They help 10KFS build trust and connections with their community members. Trust must be earned and 10KFS is willing to do the work, show that it is trustworthy, so CAB members can feel comfortable serving as a bridge between their community and us;
2. Hear ongoing feedback
   10KFS wants to be more responsive and accommodating. To include all communities across the state of Minnesota, we need to learn about the concerns and barriers for each community to participate in the Study. Changes will be made in keeping with study design and financial resources, and the National Institutes of Health (NIH) general guidelines. We are willing to carefully listen to all feedback, even if it feels uncomfortable or means finding new resources and ways to approach and support communities. Areas of influence may include:
   1. How best to reach families
   2. Accommodations to enable participation (For instance - language issues, and/or cultural challenges)
   3. Data collection of interest to specific communities that we may need to add
   4. Meaningful benefits for participants, and 
   5. How we share study findings.  
3. Have a sounding board for ideas and potential directions
   This could include new research projects piggybacking on 10KFS data, new research questions or types of data collection we should add, new partnerships we may need, and other opportunities that benefit everyone;
4. Create a statement of ethics
   We are committed to coming up with principles for 10KFS about how we will work with participants, families, and communities and conduct our research respectfully and transparently and with an eye to mutual benefit. This will also impact future potential researchers that want to work with our families and/or use aggregated data (Identities removed).
   Community partners have made clear how important a statement of ethics is for working with communities that are often underrepresented in research and that traditionally have had research done to them rather than with them, especially those that had been exploited by researchers;
5. Explore
   1. Communities’ hopes and concerns around genetic data and other information we are gathering, and what we can do to deliver on those hopes and ease concerns.
   2. Relationship sustainability and follow-up with study participants: Engaging with people to help them participate and stay with the study over time.
   3. Listen and act on other priorities that emerge from the board.

How does the CAB work?

1. We meet quarterly (every 3 months). First meeting on March 30th, and the second on June 24th, 2021. So far meetings are held virtually, but we are excited about the possibility of having them at the members’ communities, always including a virtual option for those unable to attend in person, either because of time, distance, or ability challenges. 
2. Members receive a small stipend to honor their time, and when in-person we plan to provide support for any travel costs or childcare needs.
3. Agendas are planned with members' feedback. Our interest is to have active meeting participation and productive discussions that enhance our knowledge of the community's needs, priorities, and strengths. 

Still in process

Community leaders of the CAB are a high priority for us. We foresee CAB  members and 10KFS working together to shape the Board's mission and goals. We are seeking two members to serve as co-chairs to:

1. Work closely with 10KFS to decide on priorities and agenda for each meeting; and
2. Co-lead meetings.  

Who is part of our Community Advisory Board?

1. Fourteen community members from a variety of communities and groups have agreed to advocate for their community, bringing up issues such as health disparities, challenges to be able to participate, traditions and cultural beliefs, and history of exploitation, among others. We want to make sure that they have a voice. Since we want to be a real representation of the State of Minnesota, these communities were chosen after looking at current and estimated demographic reports, influence on family health, and their impact on 10KFS goals. 
2. Even though our cap is 20 members, the CAB will continue to grow over time, as we invite advocates for communities such as American Indian/Tribal, Karen, people living with physical disabilities, that currently are not represented in our board. 
3. We welcome recommendations and connections with communities who may not be represented in our CAB and should be part of it. 
4. The communities and groups currently represented in our CAB are:
   Study participants, Aging, Public health/rural, Hispanic/LatinX, South Asian, Early childhood education, Somali, Deaf/hard of hearing, Healthcare/rural, Cancer support, LGBTQ+, Immigrants/Refugees, Hmong, African-American
   Meet all our members at our new 10KFS Community Advisory Board

Testimonials about the new CAB

CAB members:

Vusumuzi Zulu, African-American community advocate, Black Storytellers Alliance:

I expect this to be a 2-way process--I am an advocate and intermediary. I don’t want my community under a microscope, I also want my community to be looking under the microscope...I expect to transfer trust gained in 10KFS to my community as trust is earned.

Marella Laliberte, Healthcare/rural advocate, Fairview Health Services:

It was a great first meeting, and I am ecstatic to be a participating member and network with some of these amazing people. I appreciate the connections and look forward to future relationships.

Ellie Kidder, Deaf/hard of hearing advocate:

Thank you so much for letting me be part of this! Will be looking forward to more of the same. :-)

10KFS team members:

Heather Nelson, Co-Investigator:

The Community Advisory Board meeting was an important advance.

Emily Marlette, Health Visits Coordinator:

Meetings with our community engagement facilitator have helped advance understanding of what community-engaged research is, but the CAB meeting has ignited the conversation on how to best do it!

Deanna Gabrielson, Lab Liaison:

The more we involve the community in the research-based decisions, the more we will move forward in this area.  Especially in the development of the Community Advisory Board.

Jen Poynter, Co-Investigator:

To keep us moving further into community-engaged research, we need to continue to meet with the CAB!

10KFS is very proud to have launched our long-awaited Community Advisory Board with a wonderful group of community advocates! We look forward to supporting the group’s development and delivering on our commitment to make 10KFS a truly inclusive study of family health across Minnesota!

If you have ideas for additional CAB members or for how the CAB could best work, please email Study Coordinator Andrea Hickle at [email protected] or Engagement Specialist Clemen Wilcox at [email protected]. We are always open to more ideas!