Community Voice: Monthly Results Update

August 2023 Edition

Dear Community Voice Member,

Welcome to the August 2023 edition of the Monthly Results Updates! 

In these digests, we share the impact Community Voice members are making through participation in recent opportunities.

All Community Voice projects undergo our vetting process to ensure they have a positive, clear impact on the CF community and aim to engage as many diverse voices as possible. While some projects may take time to provide results or an outcome, they are always shared here. If you would like to read about past projects, browse previous editions.

CF Care Model Position Paper Committee

Recognizing that the pandemic and experiences with Trikafta have changed CF care needs for some people, the CF Foundation recently established a CF Care Model Position Paper Committee of care team staff and community members. The committee will examine the traditional CF care model (including quarterly visits with PFTs and cultures) and produce position papers to highlight changes that have occurred in recent years and guide how CF care can adapt as people with CF live longer and experience evolving health needs. The committee’s work will also include a survey on key decision points in the care model, such as the use of telehealth for virtual visits. The survey is a collaboration with the Research Triangle Institute and will be sent out to both clinical and patient/family communities, including Community Voice members, this fall. Special thanks to Stacy Allen, Lindsay Attaway, Kate Attilio, Lynda Griffin, James Lawlor, Christina Schulze, and Jacqui Sjoberg for joining a brainstorming session to inform the survey’s design. Thank you to the Community Voice members below who are serving on the committee!

Bionic Pancreas Advisory Committee

The bionic pancreas is an artificial pancreas device that has been shown to improve blood sugar control in people with type 1 diabetes, and promising preliminary data support the safety and effectiveness of the device in adults with cystic fibrosis-related diabetes (CFRD). Researchers at Massachusetts General Hospital and the Jaeb Center for Healthcare Research are planning a clinical trial to look at the use of this device in children and adults with CFRD.

At a recent Design Day, community members identified patient-reported outcomes to collect during this trial potential study burdens on participants to improve planned assessments and schedules, and strategies for successful and diverse recruitment and retention of study participants. These community members will continue to advise on this work as part of the trial advisory group. The researchers have shared their gratitude and enthusiasm to be working with the three Community Voice members below and one other Community Voice member on this project!

Committee & Workshop Experience Survey

The Community Voice team conducted a survey to better understand the experiences of CF community members who have served on national-level committees, working groups, workshops, or review projects in the past three years. The survey yielded 58 completed results which showed that overall, most community members have positive experiences. Nearly all respondents indicated that they felt respected, heard, included, and comfortable sharing and asking questions, noting that they did not feel intimidated when participating. Survey respondents also gave feedback on ways to improve future experiences, such as clarity on what committees are looking for from community members, reminders to appreciate patient insights, smaller group work, and schedule flexibility. These results have already informed the Community Voice program’s work, partnering with stakeholders to create more inclusive and flexible committee and workshop experiences for the CF community.

CF Care and Research Education & Connection Survey

The CF Foundation sent out a survey through Community Voice to learn which areas of research, science, and care community members are most interested in learning about and discussing with peers. These survey results helped inform 2023 educational and connection opportunities, including ResearchCon 2023 and ResearchCon 2024, research webinars, and other relevant content. For this survey, we presented topics previously identified by the CF community as being relevant, and asked respondents to rank these topics by level of importance. We received 482 responses, and highlights of the results included:

• The topics that respondents most wanted to learn about at webinars, conferences, and events are: 1) genetic-based therapies, 2) CFTR modulator therapies, 3) infections, 4) inflammation, and 5) GI symptoms.
• CF-related diabetes and nutrition is the biggest priority when discussing lived experiences with peers, learning about how to be treated in CF clinic, and learning about science and research progress.
• Top mental health priorities are side effects of CF medications, the effects of CFTR modulators, and anxiety.

Through this survey, we were also able to see which topics were most important to parents of children with CF versus people with CF, so we can better plan content with these audiences in mind. Overall, the learnings from this survey help us ensure that connection and education events are responding to the current interests and needs of people in the CF community. Thank you to all the Community Voice members who participated in this survey. As a reminder, recordings for ResearchCon 2023 – which was informed by this survey – are available to view at your own pace.

UPCOMING & OPEN OPPORTUNITIES

Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as reproductive genetic counseling, health equity, and more.

In the meantime, participate in some open opportunities today!

Sharing Insights & Experiences Through the CF Community Blog

Check out this recent blog post by a Community Voice member! Community Voice currently has 166 members who have written 381 posts since the CF Community Blog launched.

• What I Learned Growing up With CF in Appalachia by Mark Tremblay

• Listening to My Voice by Ashley Ballou-Bonnema
• Voicing My Health Needs Before and After Transplant by Matison Deaton
• Creating Change for BIPOC People With CF by Rena Barrow

Interested in sharing your story? The CF Community Blog wants to hear from you.

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