UICC World Cancer Congress 2006

The core element of a successful Cancer Information Service is the provision of evidence-based, high-quality cancer information tailored to users' needs.

This workshop draws on the experience of Cancer Information Services in different cultural environments to describe a variety of ways to successfully meet the challenge of giving accurate, culturally appropriate cancer information. Participants will learn techniques and be provided tools to plan and operate a CIS.

1. Recruiting and Training Qualified Staff Depending on the aims of your CIS, different target groups (general public or specific patient groups), and whether your CIS is staffed by volunteers, health care professionals, or a combination of both, qualified information staff needs a basic knowledge of oncology, ranging from prevention, diagnostics and treatment, to psychosocial issues.

Basic training, on-the-job training, oncology courses, supervision, and attending seminars can all contribute to the continuing training of information staff. Depending on the CIS activities you want to offer, the staff needs additional training in communication skills, counselling (helpline, face-to-face contacts), group activities, writing and editing (print and website), and development of intervention programmes for prevention of cancer.

2. Using Reliable Information Resources and Databases A successful CIS is able to deliver quality, up-to-date information, and to provide new information that the public may be interested in knowing more about. In this presentation, we will show ways to select reliable sources of information according to various criteria, using the French Cancer Information Service as an example, and we will show the important role of institutions in setting up information standards.

Today, health information is widely available on the Internet and can easily be accessed by everybody. However, as information professionals, we know the information on the Internet is not always quality information. One of the roles that a CIS should play is to guide the public in finding the right information according to their needs.

3. On-Going Quality Assurance and Collecting Inquiry Data On-going quality assurance serves as a tool to ensure that a CIS meets the demand for cancer information, and delivers evidence-based, high-quality information tailored to its users' needs.

Components of on-going quality assurance within the CIS are presented in this workshop, for example, monitoring, analysis of calls, self-rating, supervision, provision of staff with reliable and usable resources, staff support, and training in oncology and communication skills.

It is also important to learn from users of a CIS what information they need. If these needs are met, what should be improved? And finding out information gaps and trends. This can be achieved by collecting inquiry data on an on-going basis and by conducting user surveys. Examples of the benefit of such evaluations for the CIS, its users, cancer patients and their families will be given.

4. Collaborations and Promotion Since many other organisations and professionals are also providing cancer information to the public (such as health care professionals, the media), it is worthwhile to explore collaborations to add specific value to your CIS. Examples of valuable collaborations include hospitals, other NGO's in the field of promoting a healthy lifestyle, and medical associations. Collaborations give a CIS the opportunity to use the available resources in the most efficient and effective manner.

To be known as a reliable source of cancer information you have to promote your CIS on an on-going basis. We give examples how this can be done: by on-going promotion through regular activities such as in brochures, during events, with press releases, and also through special promotions, such as radio and television commercials, TV documentaries, presentations at medical conferences, and special Internet activities.

5. Case Study: Developing a National Public Education Facility for Preventing Cancer – Progress, Problems, and Lessons Learned Cancer is the number one killer in Singapore. The proportion of cancer deaths among all causes of death rose steadily from 14.8% (1968-72) to 27.1% (1998-2002). Of the 78,048 deaths in the total population from 1998 – 2002, cancer deaths accounted for 21,165 and 38% occurred in the economically active age group of 35 to 64 years. Although great advances have been made in the treatment of cancer, their impact on survival rates has been incremental rather than dramatic. Many cancer patients present relatively late, at which stage their treatment options are often limited. The prevention and early detection of cancer are therefore key strategies in Singapore's national cancer control efforts.

Cancer morbidity and mortality can be far more effectively reduced by prevention than by treatment. Learning to live with cancer is a new experience for patients and their families; therefore, they must rely on what others tell them about the disease. With the aid of a grant from the Singapore Totalisator Board, the Cancer Education and Information Service (CEIS) of the National Cancer Centre Singapore was created in 1999 in order to provide Singaporeans with accurate evidence-based information about avoidable risk factors and screening tests for cancer. The model chosen for development was that of the Cancer Council of Victoria (Australia), with the long-term mission of minimising the frequency of incurable cancers in Singapore.

Materials and Methods We structured the CEIS facility into five main subsections: (1) Cancer Helpline (a telephone counselling and advisory service for cancer-related queries), (2) Can-Help News (a quarterly public cancer newsletter), (3) Public education programmes, (4) Public Cancer Website Development Group, and (5) Cancer Publications Unit. Each one of these subsections pursues its own distinct performance endpoints.

Results The productivity of each CEIS subsections has improved year-on-year. The Cancer Helpline received close to 40, 000 calls during this period, of which 71% were from females and 40–45% concerned breast cancer in any one calendar year. Can-Help News increased its circulation from its first edition of 13,000 copies to its most recent print run of 30,000 while the community outreach education programmes have gained much popularity over the years with forums and health talks conducted in English and non-English speaking communities.

Conclusion Our experience indicates that the Singapore public has a strong appetite for reliable evidence-based information about cancer prevention, screening, and treatment. Relatively modest absolute increases in funding would help to satisfy this backlog of public demand, while at the same time assist CEIS to be a catalyst in helping the community take charge of their own health.

6. Introduction of the CIS Tool Box The ICISG, in partnership with the UICC, has created a web-based Tool Box. The CIS Tool Box is for any organization that wishes to start or is presently operating a service giving credible cancer information over the telephone. It is based on the experience and materials of cancer organizations that are presently operating cancer information services around the world. WHAT IS IN THE TOOL BOX • How to decide whether you are ready to start a CIS telephone service • Information on how to start and manage a CIS telephone service • Samples of materials that organizations are using for their cancer information services • Practical lessons learned by ICISG members • Information about other services

HOW TO USE THE TOOL BOX Everybody can find something to use in this Tool Box, since it is based on the worldwide experiences of people who are managing quality CIS services. • If you are starting a CIS, use the Tool Box as a roadmap. It will guide you as you plan your service and will offer you the tools and processes you need. • If you already have a service, you will find interesting ideas that can help you improve on and expand what you are presently doing. There are many tools and lessons that will be helpful to you.

For more information on the CIS Tool Box, go to www.icisg.org.