Welcome to the January edition of the Monthly Results Updates!

New to Community Voice? Welcome! In these digests you will learn about the impact Community Voice is having through recent opportunities that members have participated in. If you’d like to read about past projects the group has been involved in, click here to browse previous editions.

As we advance towards a cure for cystic fibrosis, input from the community was critical in the development of the CF Foundation’s Strategic Plan. Reflecting on the last six decades of progress and what it means for people with CF and their loved ones moving forward, this five-year plan focuses on three key areas of focus: cure, care, and community. Thank you to each Community Voice member who took the time to participate in numerous surveys and focus groups, which helped us better envision how the Foundation will evolve over the next five years. Click here to find the Foundation’s long-term strategic plan.

Members of Research Voice have been working with Vertex Pharmaceuticals to inform the development of the MyRealWorld® online study which aims to understand the total burden of living with or caring for someone with cystic fibrosis. Participants were key in reviewing the study protocol and outcome measures as well as testing the study website, to improve study design and experience. This app-based study aims to understand the individual experience of the disease, symptoms, treatments, daily activities, and quality of life, via questionnaires.

If you are interested in learning more or participating, please click here.

In 2017, members of Community Voice contributed ideas and perspectives about communication between CF care teams and those living with CF. Those who participated shared their personal experiences regarding communication in healthcare and offered suggestions on how to support better communication at the point of care. This project was part of a larger research study led by the Partnerships for Sustaining Daily Care team (PSDC) at the Foundation. Because of your input, the PSDC team was able to determine key themes and ideas about communication in CF care. To learn about the results of the project, click here to view the abstract.

Since this project took place, the Foundation has invested in developing the Partnership Enhancement Program (PEP), a relationship-centered communication educational experience for CF care teams. To learn more about PEP and if your care team is participating, email Katherine Raymond, PEP Manager, at kraymond@cff.org. Thank you for your contributions!

More than ever before, the voice of the community is crucial in improving CF research and care. To help our team prioritize how we can improve Community Voice and your member experience, we conducted an end of year survey. Thanks to everyone who participated and shared their feedback! Click here to find results from the survey and be on the lookout next month for our Year in Review Report which will include 2019's major accomplishments, milestones, and more.

Check out these recent blog posts by Community Voice members! Community Voice currently has 102 members who have written 255 posts since the CF Community Blog launched!

Want to contribute to the CF Community Blog? Fill out this questionnaire.

Invite others to join Community Voice by sending them to cff.org/CommunityVoice.

For questions or concerns, please contact the CF Foundation's Community Partnerships department at communityvoice@cff.org.