Performance Improvement 2008. Does Service of the Genetic and Rare Disease Information Center Satisfy Users?


This study examined satisfaction of patient, public, and professional customers with services provided by information specialists at the Genetic and Rare Disease Information Center. A customer satisfaction survey asked what was the demographic profile of information center customers, how did customers learn about the information center, did customers find the information responses satisfactory, and what did customers do with the information? All individuals who submitted inquiries to the Center by telephone or e-mail during a four-month period were included in the survey. They were given the option of responding through a Web-based or paper survey available in English and Spanish, consisting of five demographic and 16 value questions.

The typical information center customer was a white, non-Hispanic, English-speaking female between the ages of 31 and 40 with a post-graduate degree. Customers usually got their health information over the Internet. Customers found the responses to their inquiries new, useful, right for their personal situation, and trustworthy. The responses arrived within 5-10 business days, were right for the customers´ reading levels, clear and easy to understand, and contained the right amount of information. Customers shared or planned to share the information they received with family members or friends. The researchers recommended that, for future user surveys, more demographic information be sought and that efforts be made to reach minority populations. Researchers also recommended that the Center consider developing a web site where the information it provides could be made available.

Report Title: Customer Satisfaction Survey of the NHGRI/ORD Genetic and Rare Diseases (GARD) Information Center. Final Report of Analyses of Survey Data,
Agency Sponsor:
NIH, National Institutes of Health
Federal Contact:
Vence Bonham, J.D., 301-594-3973
Lisa Lanier

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"PerformanceImprovement2008.pdf" (pdf, 1.29Mb)

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