National Cancer Institute's Patient Education Resources:
Who's Using Them and How?

Daniel S. Eckstein, M.A.
Allison Zambon, M.H.S.
Olivia Propst, M.Ed.
And the staff of the National Cancer Institute's
Office of Communications and Education
Suggested Citation: Eckstein, D, Zambon, A, Propst, O. National Cancer Institute's Patient Education Resources: Who's Using Them and How? Cases in Public Health Communication & Marketing. 2007 June. Available from:

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Abstract

The National Cancer Institute (NCI) provides educational materials to those affected by cancer and the general public. Historically, this has meant printing large quantities of materials and distributing them to the public at little or no cost; however, demand for the materials outstrips the government's resources to provide them. The majority of NCI resources are ordered by organizations that then distribute them to patients and the general public. Therefore, NOVA Research Company conducted a case study analysis to examine how some of those organizations use the patient education resources and to assess barriers to effective use. We conducted site visits and interviews with organizations that provide cancer patient education materials to their constituents. All personnel interviewed primarily use NCI materials with the people they serve. Findings included that NCI materials are regularly displayed and disseminated alongside materials from other sources, and that ordering limits are the greatest barrier to using NCI materials. In conclusion, NCI publications are an integral component of these organizations' patient education function that would be adversely affected should NCI print and distribute fewer materials. Additional broad-based investigation into the patient education needs of these organizations is warranted.

Overview

The National Cancer Institute (NCI) provides educational materials to those affected by cancer and the general public. Historically, that has meant printing large quantities of educational materials and distributing them, primarily via NCI's Cancer Information Service (CIS) toll-free number (1-800-4-CANCER) or Web site (www.cancer.gov). Printing and distributing education resources is costly and warrants a closer look to better understand who utilizes these resources and how. While previous studies have examined the development and effectiveness of specific patient education resources, few have considered the actual dissemination of these resources. It is known that the majority of NCI resources pass through the hands of intermediaries on their way to patients and the general public. To evaluate effectiveness of reach to the end user, NCI decided to examine the steps intermediary organizations take to provide patient education resources to those in need.

Background

In the United States, nearly 1.5 million people are expected to receive a cancer diagnosis in 2007.ⁱ The NCI estimates that as of January 1, 2003, there were 10.5 million people in the United States living with cancer.ⁱⁱ As the number of cancer survivors increases with the discovery of new and more effective treatments, cancer educational needs continue to grow. NCI's Office of Communications and Education (OCE) develops and disseminates educational materials to cancer patients, survivors and their family members in the form of booklets, brochures and videos. These free resources are predominantly disseminated in print format in response to orders primarily received through telephone calls to 1-800-4-CANCER and through the NCI Web site, www.cancer.gov. In addition, the majority of NCI's education resources are available for viewing, downloading and printing at www.cancer.gov.

OCE distributes approximately 3 million patient education resources in print format each year (unpublished data, 2006). Because the demand for print materials outstrips the government's resources to produce and ship them, NCI places ordering limits on the materials. Typically, the limit is 50-100 copies of each piece per month per person or organization. However, for cost-recovery purposes, a charge is placed on orders exceeding 20 pieces of educational material per month per person. Given that the 2008 budget estimate for printing and reproduction at NCI is lower than the 2007 budget, it is possible that NCI will print fewer publications, thus increasing the gap between supply and demand.ⁱⁱⁱ Therefore, it is critical that NCI understand not only the dissemination processes for its materials but also the impact of order limits and cost recovery charges in order to determine the critical factors for getting materials into the hands of those in need.

The Distribution Process

In 2006, approximately 3 million OCE resources were ordered and shipped from NCI's warehouse. Data from these orders indicates that organizations, rather than individuals, order approximately two-thirds of the publications. The top customers among these organizations include hospitals, cancer centers, advocacy groups, health professional organizations and the pharmaceutical industry. Figure 1 illustrates the distribution process of NCI patient education resources.

Purpose and Methodology

Little is known about what happens to publications once they leave the NCI warehouse, and the redistribution process (shown in the light blue box in Figure 1) is not well understood. NCI commissioned NOVA Research Company to gather information about the redistribution process from representatives of the primary organizations that order large quantities of NCI publications. NOVA provides technology, consulting and research support services for the global health and research communities. NCI will use the information gathered to determine whether intermediary organizations are the most effective vehicle for distributing patient education resources and what can be done to improve the process.

We chose to investigate the redistribution process at five organizations. Site visits were planned for three organizations (i.e., hospitals) that offer the public direct access to the publications (e.g., display racks), and phone interviews were planned with two organizations (e.g., health professional organizations) that offer indirect access by distributing the publications to health professionals.

Direct Access Organizations

Organizations that offer direct access to NCI publications primarily include hospitals and cancer centers. Since NCI-designated cancer centers receive NCI funding, we expected that they would have the most resources (e.g., space, time, money) to use in cancer patient education and that their setup might represent the best-case scenario for distribution of materials. As such, we conducted our first site visits and interviews at these centers, followed by a site visit at a large hospital's cancer center for comparative purposes.

Demographics

NOVA visited two NCI-designated cancer centers-Rural Cancer Center and Urban Cancer Center*-to determine how cancer education materials are used and distributed. While Rural sees more than 2,300 cancer patients per year, Urban sees approximately 6,000 cancer patients per year. At Rural, we interviewed the education coordinator, Debbie, and the Breast Center's health educator. At Urban, we spoke to Jennifer,* the patient education coordinator, and Alice,* a social worker in the Patient and Family Services Department.

As can be expected with a large facility, departments within Rural and Urban function independently for the most part, such that each manages its own patient education needs. However, both cancer centers have centralized resource areas dedicated to cancer patient education and some standardized practices in place for ensuring that patients receive education resources. Both also find NCI resources to be an indispensable part of their education programs. Rural's health educators distribute approximately 2,000 NCI patient education resources per year, while Urban distributes approximately 4,800.

NOVA also visited Community Cancer Center* (Community), a cancer center in a large multispecialty hospital setting. The director of cancer care at Community, Pamela,* and two of the nurse care coordinators (Amy* and Tara*) were interviewed about patient education materials usage at Community.

Located within an hour's drive of two NCI-designated cancer centers, Community sees more than 2,600 new cancer patients each year. One Community staff member estimated that Community distributes approximately 1,000 NCI patient education resources per year, but based on descriptions of material usage, the actual number could be as great as six times this estimate.

Physical Setting

Resource rooms are prominent features of many cancer centers, and all those visited for this project had at least one resource room. All patient resource rooms were well stocked with NCI and other resources, including videos and computers with Internet access, with the exception of Community's library, which features fewer booklets and more books, DVDs, CDs, and videos for viewing in the library or taking home.

Literature displays are also a prominent feature of cancer centers, whether in the examination rooms or in the public waiting areas. For example, Rural finds that patients are more likely to take materials from common spaces. Beside its custom-made Learning Curve literature display, Rural features a touchscreen computer offering NCI educational content in English and Spanish. There is also a literature display in "Ramona's Room," which is stocked with wigs, scarves and other cosmetic items used by patients undergoing cancer treatment.

All three cancer centers use patient education binders as a means of ensuring that literature gets into the hands of those in need. Each patient at Urban and Community receives a three-ring binder of educational materials tailored to their specific cancer. The Breast Center at Rural offers a similar resource.

Selection of Resources

NCI-designated cancer centers tend to offer a wide variety of NCI patient education resources. Urban finds its most popular book to be Eating Hints, followed by Chemotherapy and You. Jennifer and Alice both consider NCI to be a trusted source of information and the first place to look for patient information when a resource need is identified. As Jennifer explained, "I know there is a lot of research and evaluation that goes into your booklets... I go to you [NCI] first." Urban has a similar preference for NCI resources. Debbie explained, "Ninety to ninety-five percent of the materials we give out are from either NCI or ACS [American Cancer Society]."

Community tends to use fewer materials but still turns to NCI first. Three booklets that almost all patients get at their first visit are Chemotherapy and You, Radiation Therapy and You and Eating Hints. Tara said, "I use the [NCI] booklets absolutely every single day... We all [the care coordinators] use those."

Other sources of patient education materials are less practical because they cost money, and "I have not found them to necessarily be any better than what I can find at the NCI or the ACS," Debbie says. However, all three cancer centers obtain resources from organizations other than NCI, including resources to fill gaps on topics such as sexuality (ACS), specific leukemia types (Leukemia & Lymphoma Society), breast cancer (Komen Foundation) and fertility (Fertile Hope). Due to the limited number of videos produced by NCI, disease-specific patient education videos typically come from other organizations as well.

Acquiring NCI Resources

Finding out about new patient education materials is not difficult for cancer centers due to professional connections in the world of patient education. Frequent use of NCI's Web site (www.cancer.gov) enables staff to recognize new materials when they are added. Additionally, staff at both NCI-designated cancer centers learn about new materials by being members of the NCI Cancer Patient Educators listserv. Community staff are not part of this listserv and expressed the desire for a formal alert system when new materials are released. However, Amy suggested that receiving a promotional copy of new materials would be preferred "because we get so many e-mails."

Once NCI-designated cancer center staff learn about a new resource, individual staff members handle the ordering of materials. However, at some cancer centers, if the topic could be controversial, staff will seek advice from a patient education committee.

Satisfaction

Cancer centers rated their satisfaction with NCI resources at the highest level. When asked to give the materials a letter grade, all those interviewed assigned NCI materials an "A." Amy and Tara agreed that what makes NCI resources preferable to others is that they are "easy to read, language appropriate, include pictures and are fast reading."

Urban interviewees were most satisfied with materials with photographs (e.g., Facing Forward: Life After Cancer Treatment, Taking Time) and least satisfied with materials with a high reading level (e.g., Radiation Therapy and You) and those with drawings (e.g., Young People With Cancer). In fact, Urban considers the "cartoonish" graphics of some materials to be a barrier, since they felt that some low-literate patients find these types of materials insulting. They expressed a need for low-literacy materials with photographs.

Anecdotally, patients seem to be happy with NCI resources. Many NCI materials are distributed more quickly than other resources. In fact, Jennifer stated that patients look at some resources from other organizations and return them to the shelf because they are "...very, very high level and sometimes I'll see someone look at it and they are already lost." In addition, Jennifer stated that "patients that come into the resource room... seem attracted to the [NCI] booklets." As a result, cancer centers continually order NCI materials. Alice shared that among the social workers, patient feedback determines the ordering and use of materials. Rural and Community do not solicit patient feedback on NCI resources, but both sense that the resources are meeting their patients' needs since they have not received any complaints.

Barriers to Use of NCI Materials

While interviewees understand the need for ordering limits and cost recovery, ordering limits in particular present a barrier to the use of NCI patient education materials. Both NCI-designated cancer centers shared that running out of materials because of the limits presents a problem, and the solutions currently offered come with their own problems. Alice stated that while Urban can print materials from the NCI Web site, the copies "aren't as attractive or durable." Debbie shared a similar opinion. A photocopy, she said, "doesn't work as well because it doesn't look as nice, it doesn't fit in the brochure rack as well, and it flops over." This leaves cancer centers to search out other sources of educational information to fill the gap until more materials can be acquired from NCI. To overcome this barrier, Alice said she personally can "see paying something for NCI literature because it is so well done... It's worth a lot to me... I know if I see NCI I'm set."

To some staff at community organizations, the cost recovery charges represent a barrier. "Sometimes I'll get someone else to go online and ask them to [order for me]. But we all have needs, so sometimes that doesn't work very well... You [NCI] need to bump up that request limit a little more," Amy said. Although Community staff do self-print publications when necessary, they do not favor obtaining their most utilized NCI materials in this manner. They prefer the ease of picking up an NCI-produced booklet and expressed that self-printing to get around order limits would create a time burden.

When asked to consider how the Internet might alleviate demand for print resources, interviewees shared strong opinions. In Jennifer's experience, "A lot of people still like having a booklet in their hand. They can't look at stuff online while sitting in the waiting area, but they like to look at the materials they pick up here while they are waiting." Likewise, Debbie shared that a survey conducted a few ago years showed that many patients were still not comfortable with the Internet. Tara expressed a similar opinion: "A lot of the patients need to be handed information because they don't want to investigate. A lot of them are elderly and they don't have Internet access or an understanding of how to use the Internet, plus they are so intimidated that they are not motivated to go in and look."

Interviewees also noted concerns about the quality of information patients acquire from the Internet. "We don't know what Web sites they are using. If we give them materials, we know exactly what information they are getting," Amy said. Community makes an effort to steer patients' Internet searches to reputable sites by producing "Pathfinder sheets," one-page information guides that include a list of recommended books, videos, articles and Web sites. Pamela added, "We always tell [our patients], 'NCI is one of the most reputable Web sites.'"

All agreed that there is no substitute for personal contact with patients. "There is nothing like that one-on-one contact with the health care professional where the nurse comes in and says, 'I found this information for you; it's National Cancer Institute information; it's specifically on your type of cancer,'" Debbie noted.

Indirect Access Organizations

It is somewhat surprising to see industry and professional organizations on the list of organizations that order the most NCI

patient education resources, since they do not typically have direct interactions with patients. These types of organizations instead offer indirect access to NCI publications by providing them to health professionals. Still, industry-related organizations (i.e., pharmaceutical companies) are known for producing materials that promote their own products and services. Professional organizations often assist in promoting NCI educational resources but also produce many of their own materials. Why, then, would these organizations turn to NCI patient education resources? In order to answer this question, NOVA conducted interviews with representatives from one health professional organization and one pharmaceutical company.

Description

We interviewed Tracy,* a clinical oncology nurse educator with MegaPharm,* a leading research-based pharmaceutical company, to provide a better understanding of how and why industry would utilize NCI resources. Tracy is one of 20 MegaPharm clinical educators, the primary users of NCI materials at their company. NOVA also interviewed three representatives of the Oncology Professionals Organization (OPO),* a large oncology-focused health care professional organization, to learn how they use patient education materials. Jessica* represents the organization's business development office, and Alexis* and Bonnie* are project managers in the OPO's education department.

Usage of Patient Education Materials

The clinical educators at MegaPharm work to educate oncology physicians, nurses and pharmacists, as well as internal constituents such as oncology pharmaceutical sales representatives, about a variety of diseases, medications, side effects and clinical trials options. Tracy spends approximately 80 percent of her time teaching classes to health professionals, and it is through these classes that she distributes a large number of NCI patient education resources.

OPO conducts similar classes for nurses on a variety of topics in order to help them better care for their patient population, and uses NCI patient education resources as part of these classes when appropriate. Typically, OPO provides course attendees with patient education materials to take back to their workplaces to share with patients, colleagues and others. Bonnie summarized OPO's usage of NCI materials: "When we order volumes, it's not necessarily going directly to patients; it may go indirectly to patients. But what we're doing more of is letting people know what is available so that they can access NCI to request materials that they would then give to patients."

MegaPharm's work can be described as having this same "ripple effect." If, for example, Tracy teaches a chemotherapy class of 25 nurses (each of whom receives a copy of the NCI's Chemotherapy and You), and each nurse regularly sees 100 patients, 2,500 patients benefit from the information in the NCI booklet. Considering that Tracy's team teaches an estimated 50 chemotherapy classes each year, and that this class is but one of many, the "ripple effect" is immense. Tracy's team reaches a minimum of 3,000 clinicians each year, she said, and she personally distributes 50-60 NCI materials per month. Tracy and the other MegaPharm educators also conduct education sessions with clinic and hospital staff. During these visits to clinical settings, Tracy takes NCI publications with her and frequently visits www.cancer.gov/publications to show clinicians the variety of materials available from NCI and how they can order their own supplies. Tracy believes that approximately 40 percent of these clinicians have never been to the NCI Web site to order publications before her visit; in many cases, hospital education departments or libraries handle ordering, rather than physicians or clinical staff. "And unless the patient goes by the library, the patient doesn't have access to it and the staff doesn't know about it either," Tracy said.

Selection of Resources

When the project managers at OPO have to select resources for their classes, they often begin by looking at NCI materials. As Alexis stated, NCI is one of their first stops because "we know that NCI products are probably the highest quality that's out there." NCI products also apply to a broad range of patients. At MegaPharm, Tracy often plans her classes around NCI materials due to their high quality. "I think I spend more time teaching to topics for which materials are available through the NCI," she said.

At OPO, Alexis will often order NCI materials and distribute them without a large review process because she knows "it has been so well put together and reviewed to start out with." At MegaPharm, the team of clinical educators meets periodically to discuss educational topics and existing resources. Each member of the team orders the resources that he or she desires for upcoming classes, but they share recommendations with each other.

Overall, MegaPharm and OPO utilize a wide variety of NCI patient education resources alongside materials from other sources to ensure that class topics are thoroughly covered. For example, Tracy finds that classes addressing the connection between cervical cancer and human papillomavirus (HPV) are currently in demand due to the development of an HPV vaccine, so she finds herself frequently using NCI's materials on cervical cancer and Pap tests alongside the Centers for Disease Control and Prevention's (CDC) resources on HPV and HPV vaccine. Other education resources are often selected because they focus on topics not addressed by NCI resources or cover topics in more detail than NCI resources. For example, interviewees use the Wellness Community's resources on lung and ovarian cancer; Myriad's resources on genetic testing; and the National Ovarian Cancer Coalition's resources on ovarian cancer.

Acquiring NCI Resources

Tracy and Bonnie order NCI resources online since it is a quick and easy process. Both commented that they often learn of new NCI resources by reviewing the NCI Web site. Tracy suggested that rather than this hit-or-miss method of learning about new resources, the NCI Web site (www.cancer.gov) could offer an alert service, potentially through its publications page (www.cancer.gov/publications). Individuals could register their areas of interest and receive e-mail messages each time a relevant new resource is added.

Satisfaction

OPO and MegaPharm representatives are satisfied with NCI patient education materials. Bonnie stated that she likes that materials are of high quality, cover the cancer continuum, are available in different languages, are "kept up to date" and "evolve over time so that I think they become more and more applicable to broader groups of patients." Tracy gave NCI patient education resources the highest score on a rating scale due to the "readability . . . and pictures." Tracy perceives that the physicians to whom she distributes NCI materials are satisfied with them. She said, "I haven't heard any negative feedback."

Barriers to Use of NCI Materials

The OPO interviewees commented that they have not experienced any barriers to using NCI resources. If there is an ordering limit on a particular resource, they might try to negotiate for additional copies or reevaluate whether they truly need that quantity of publications. However, Tracy commented that she hears occasional complaints from physicians about "ordering large quantities and having to pay for it." Offering shorter publications or condensed versions of resources like fact sheets for self-print with an option for organizations to co-brand (i.e., to pair their name and logo with NCI's) the resource would be helpful, Tracy suggested. "I think they [MegaPharm] would be very interested in either using it or assisting others in using it. Some physicians' offices, for instance, would probably love that," she said. Like the OPO representatives, Tracy reported that ordering limits and cost are not a barrier for her, and on the few occasions when she has run out of desired resources, she has borrowed them from colleagues. Tracy stressed that, overall, the dissemination process of patient education resources from NCI is "working well."

Tracy commented that she thinks it is important for NCI to continue to offer print publications since not everyone has Internet access, particularly older patients. Additionally, "I think that most physicians will not take the time to look at [patient education materials] online, whereas if you give them something in their hands, they can look at it when they are riding in a car; they can look at it when they are sitting down between patients when they are in clinic and they don't have a computer necessarily available. So I think at least one copy they need to see in print," Tracy explained.

Conclusions

Organizations that order education materials for cancer patients are pleased with NCI's resources. They turn to NCI more often than other sources of cancer information because of NCI's high-quality products, consistency, credibility and trustworthiness. When they use patient education materials from sources other than NCI, it is often only to fill information gaps. In fact, NCI materials are so highly respected that organizations will at times plan their education sessions around the resources currently available from the Institute.

Overall, the process of disseminating NCI patient education resources works well. Through various ordering and distribution processes, cancer centers, hospitals, professional organizations and pharmaceutical companies are acquiring and providing education resources to those in need-either directly or through the hands of health professionals.

As expected, NCI-designated cancer centers provide a model for dissemination of resources through multiple methods. These organizations learn about new resources through an NCI listserv and are able to absorb the recovery costs associated with ordering large quantities of materials. The major barrier experienced by NCI-designated cancer centers is the ordering limits-these centers are not always able to keep enough NCI materials in stock. Despite this, NCI-designated cancer centers reported being pleased with the ordering and distribution processes, as they currently exist.

Other organizations experience different barriers. While NCI-designated cancer center staff learn of new resources through listserv membership, representatives of all other organizations interviewed learn about new resources mainly by browsing www.cancer.gov, meaning that these organizations are less likely to find out about new publications in a timely manner. One solution to this awareness gap suggested by two interviewees warrants particular consideration given the low cost that would be associated with its implementation: NCI could add a feature to http://www.cancer.gov/publications that would enable users to register for automatic alerts each time a new resource is added in the user's designated areas of interest.

Additional barriers for some organizations include the low cost-recovery threshold and the problem of out-of-stock items. Given the facts that NCI's publication budget is limited and that these barriers were infrequently cited during interviews, solutions to these barriers may best be addressed through organizational work-around. Several organizations that learned about the Ride-On Program (see sidebar) during the interviews determined that this could be a viable option for meeting their education materials needs. Additionally, self-production of publications-shorter co-branded versions, or the materials currently available via http://www.cancer.gov or the NCI Educational Resources Dissemination Options Program (see sidebar)-appears to be an appropriate stop-gap measure for most organizations when items are not in stock. Feedback from interviewees suggests that electronic media are not yet a viable alternative to print. Many people still lack access to the Internet and even if access is available, most of those interviewed indicated that they still prefer to have a print copy that a patient can hold and peruse.

As a result of these case studies, OESI will investigate the redistribution process in more detail, in part by conducting a survey of organizations that order NCI patient education materials. The survey will enable a broader understanding of the redistribution process and the barriers to disseminating patient education materials.

Side Bar

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