Duke University's Final Report
At Duke University, a total of 3,000 sets of the revised CCFHH booklets were ordered to enable distribution through the LFL Health Risk Assessment program called Health Check. To facilitate the integration of booklet distribution into the Health Check program, an orientation session was held with the LFL nursing team.
Following the orientation, the booklets were introduced into the routine Health Check appointment by inclusion in the employee folder, with special attention brought to it through nurse discussion and an attached introductory letter. Approximately 250 employees attend a Health Check session each month. A total of 1,663 booklets sets have been disseminated to Duke employees through Health Check. The monthly totals are below:
November: 116
December: 172
January: 234
February: 276
March: 306
April: 279
May: 280
In an effort to expand access to the booklets beyond the Health Check program, a webpage was developed, www.genomestohealth.org/family-history. The site contains information about FHH and the Duke-Genetic Alliance project, including the booklets and supplemental materials in PDF form for download, as well as links to additional FHH resources.
- 13,188 website hits, of which 4,029 were unique visitors
- 29% of visitors came to the site through topical searches using Internet search engines such as Google
- 2,012 downloads of PDF files of the booklets and supplementary materials
A survey was developed and approved by the Duke University Medical Center Institutional Review Board to assess the impact of receiving the booklets and explore employees’ previous FHH collection and sharing experiences. All Duke employees (18 years or older) who attended a LFL Health Check appointment where they received the booklets and provided an email address to LFL were eligible to participate in the survey.
Overall, the booklets were very favorably evaluated. The vast majority responded:
- The conditions described were “Very Much (66%)/Somewhat (30%)” personally important.
- The booklets explained how to gather FHH “Very (64%)/Somewhat (35%)” well.
- The employee stories were “Very (38%)/Somewhat (45%)” helpful.
- The local resources were “Very (64%)/Somewhat (33%)” helpful.
- FHH should be a part of Duke employee health programs: (Definitely (64%)/ Maybe (32%).
- Distributing booklets through Health Check is appropriate: (Definitely (73%)/ Maybe (21%).
- FHH was “very/somewhat” (98%) important to their health.
- 34% of respondents indicated that they first learned about FHH through the booklets.
- 55% of respondents felt they could “definitely” collect their own FHH.
- 68% reported they had attempted to collect FHH in the past.
- The most significant challenge for collecting FHH was that relatives lived far apart (54% “very/somewhat” difficult), followed by not having enough time to do it (45% “very/somewhat” difficult).
- 83% of respondents reported giving FHH to their healthcare provider.
- FHH information was given to a provider most often through completing a form (43%).
- 31% reported making updates to their FHH.
- 67% reported discussing FHH with their healthcare provider.
