ATTACH 3_Prior sub-study descriptions_9-22

ATTACHMENT 3: Previous Sub-study Descriptions

Pretesting/Formative Research Sub-study Examples

(Under OMB No. 0925-0046; conducted between 2007-2010)

1. The NCI conducted an independent web-based survey of visual methods for communicating the uncertainty of individualized cancer risk estimates. The objective of this study was to collect formative data to inform development of a new cancer risk prediction model, the Colorectal Cancer Risk Assessment Tool (CCRAT), developed by Dr. Andrew Freedman and colleagues in the Applied Research Program and the Division of Cancer Epidemiology and Genetics. Findings were used to determine and design the best, most effective visual displays and educational formats for communicating the results of the CCRAT to clinicians and laypersons. This research has helped NCI become more efficient in the development of a new cancer risk protection model.

2. For users of NCI’s PDQ adult cancer information treatment summaries, the NCI conducted a web-based survey. The purpose of this formative research was to better understand the needs of the NCI’s PDQ adult cancer information treatment summary (www.cancer.gov/cancertopics/pdq/cancerdatabase) users so as to guide future improvements to the PDQ summaries. These findings helped NCI to improve the quality of treatment summaries available for healthcare professionals.

3. The NCI conducted a web-based survey to assess organizational use and dissemination of NCI patient education resources. The NCI’s OCE currently gathers data about who orders the 250,000 pieces of patient education material that are shipped out on average each month however, little is understood about what happens to these materials after they arrive at the ordering site. Data show that the bulk of these patient education materials are ordered by organizations such as cancer centers, hospitals and clinics, and community-based organizations, professional associations/organizations and commercial organizations. This research ultimately allowed NCI to efficiently assess how patient education materials are used in outside organizations, and if they are useful documents for practitioners.

Previous Customer Satisfaction Sub-study Examples

(Under OMB No. 0925-0526, conducted between 2004-2007)

1. The NCI designed a survey to help understand how relevant, useful, and appropriate four of its existing pain products (two brochures, a video, and a pain scale) are to health care providers who work closely with patients experiencing pain due to cancer. The findings from this satisfaction survey helped NCI modify and improve the educational materials to ensure that they met the needs and standards of the health care providers who distribute and use them. The survey was administered to approximately 500 practitioners who are part of the former NCI’s Office of Education and Special Initiatives (OESI) database of health care providers.

2. The NCI conducted a survey to determine if organizations that are on the notification list have used the “Ride-On” program, and if so, how satisfied they are with it. When the NCI prints publications, any partnering organization can add their organization name/logo on to the print order, which is called a “Ride-On,” allowing the organization to obtain extra supplies of specific NCI publications while taking advantage of lower Government printing costs. The demand for these types of materials is high, and interested organizations are placed on a notification list so they are informed when an opportunity to use this mechanism becomes available. The survey was administered online to the 44 organizations, including cancer centers, hospitals, health clinics, patient service organizations, and advocacy organizations that were currently on the “Ride-On” programs notification list. The findings from this satisfaction survey helped NCI modify and improve the “Ride-On” program to ensure that they were meeting the needs of our partner organizations.

3. The NCI conducted a telephone survey to participants on the “Understanding NCI: Toll-Free Teleconference Series.” The NCI’s former Office of Liaison Activities (OLA) had started the “Understanding NCI: Toll-Free Teleconference Series” in the fall of 2005 to allow members of cancer advocacy organizations, survivors, family, and friends to learn more about NCI’s important cancer research programs and how advocates are involved. The participants varied from call to call, but typically include cancer advocacy representatives, cancer survivors and patients, health care providers, and federal/NCI employees. Each teleconference was open to the public and no registration was required. The telephone survey was conducted on the remaining four Spring 2007 Teleconference calls. Results from this evaluation helped NCI to determine the participants’ satisfaction with the program, understand if it was valued by the public as a helpful method to learn about NCI’s research and programs, and to assess if any revisions to the teleconference needed to be made. The survey was administered online to approximately 50 individuals at each of the four remaining calls, for a total of 200 responses. The number of participants per call varied, typically from 15-100 with an average of 50, with the majority of participants not being federal employees.

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