(24) Making CF community insights more accessible: An overview on the CF Foundation Community Data Repository

Background: Community Voice is a program that enables the CF Foundation and CF researchers/clinicians to tap into the lived experiences and insights of the CF community. Since this program began in 2014, Community Voice has provided volunteer opportunities for community members and has shaped CF research, care, and CF Foundation programmatic efforts. To ensure that gathering insights and learnings from community members is efficient and not duplicative of past research that has been conducted, the CF Foundation created the Community Data Repository in 2018. This effort was designed to house past research on insights of the CF community, organize the research, and tag it for future use.

Methods: Previous community research and their methodologies were identified and organized in chronological order. These included notes from interviews with community members, focus group reports, survey result reports, and other community data collected. Software was identified to assist in tagging efforts and QSR International® NVivo 11 for Windows was chosen. NVivo was chosen to create hierarchical tagging. Each project was reviewed, tagged, and sorted by chronological order by two reviewers. Tags were then categorized, consolidated, and cleaned up. Over 100 total projects were tagged, most of them surveys or focus group notes. Nearly half were Community Voice projects completed in the last 5 years (2017-2022). All raw data was then subsequently organized separate from NVivo to allow open access and utilization for users.

Results: About one-third of tags fell under the life with CF categorizations, over 600 total tags. This includes research and data relating to connecting with others, mental health, perceptions of CF, aging, nutrition, and reproductive health. The remaining two-thirds of tags were sorted into four other major categories: CF complications (400+), research (300+), access (over 300), and delivery of care (300+). CF complication tags included community data on complications people living with CF face like pulmonary complications, GI issues, endocrine complications, sinus complications, and aging-related issues. Research tags mostly comprised of the community’s perceptions of clinical trials, modulators, research prioritization, and drug discovery. Access tags include access to health insurance, health care expenses, and policy tags. Delivery of Care includes community data on treatment and therapies, treatment burden, care centers, and diagnosis of CF, and other complications. These five major categories make up most of the tags in the Community Data Repository. In addition to these, tags related to the CF Foundation were also created. These allow flexibility in tagging programmatic and CF Foundation-related efforts within community data collected. Lastly, an admin tag was also created to denote certain characteristics for projects, like available segmentation or potential data cuts.

Conclusions: The Community Data Repository provides a robust look into past community research involving people living with CF and their family members. This resource is available, upon request, to CF researchers and clinicians who want to partner with the community in future projects and is also available to facilitate future engagement efforts.

Acknowledgements: Cystic Fibrosis Foundation, Community Voice, Bethesda, Maryland. We would like to thank all the adults with cystic fibrosis and family members across the United States who participate for sharing their insights.

References: