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Minutes from the International Cancer Information Services Group Annual Board Meeting, Oslo, July 3rd 2002

ACTIONS ARISING FROM THE MEETING

• Board members will post their Oslo conference abstracts or posters on the ICISG listserv.
  
• Board members will provide comments to Catherine on the governance paper before the end of July.
  
• Hilke will distribute the draft ECL quality standards for web health information on the listserv
  
• In the context of UICC Capacity Building, Catherine and Marion will draft a CIS assessment tool to help other countries identify CIS needs.
  
• Catherine and Doreen will draft objectives for the UICC Support and Capacity Building Strategic Plan
  
• Mary Anne and Anne will follow up on the ICISG Exchange Program
  
• Board members will send a biographic paragraph and comments on the member's profile form to Anne before the end of September.
  
• Monika and Anne will develop the key points for the organization profile one-pager to be posted on the website.
  
• Chris will undertake the development of the ICISG logo.
  
• Marion and Cora will start planning the content of the plenary session for the next UICC Global Conference.
  
• Board members will send suggestions for plenary session outline to Marion and Cora.
  
• Catherine and Anne will send a letter to the UICC Organizing Committee 2004 recommending that ICISG participate in a plenary session and present a course.
  
• Chris will coordinate a research project on CIS and complementary and alternative therapies.
  
• Mary Anne and Anne will contact UICC to suggest that the exchange program application be adapted to include a fellowship in Support and Building Capacity.

MEETING

23. WELCOME AND INTRODUCTION
Catherine welcomed everyone and introduced the agenda for the meeting.

24. MINUTES OF MARCH 27, 2002 CONFERENCE CALL
Catherine listed actions items from the March 27, 2002 conference call. The minutes of the conference call were adopted without changes. It was suggested that abstracts or posters for the Oslo conference be posted on the ICISG listserv.

25. GOVERNANCE
The Governance paper was distributed prior to the meeting. Board members were invited to provide comments to Catherine before the end of July. A brief discussion followed and the following suggestions were made:

• Add ICISG mission statement
  
• 3 categories of members should be defined:
  o Member - organization with established CIS
  o Associate Member - organization planning to establish a CIS
  o Expert Member - individual nominated by the Board for their CIS knowledge
  
• Broad representation is desired among Directors of the Board, and more than one Director can be from the same country.
  
• Add role and function of the Board
  
• Expert Members elected as Directors of the Board will have a portfolio
  
• Clarify terms of office and rotation
  
• Electronic voting via website/email will be allowed, the voting form will be posted on the website
  
• In-person Board meeting will be scheduled once per year and conference calls twice per year.
  
• Minimum standards paragraph will emphasize core principles for membership.

The final Governance document will be posted on the ICISG website.

26. MINIMUM STANDARDS
Doreen A. explained that the Minimum Standards, which address operations of telephone-based services, were developed with the US, Canadian and Australian operation guidelines. It was agreed that minimum standards for web dissemination be added. Hilke will distribute the draft ECL quality standards for web health information on the listserv.

All present agreed that we should maximize the use of the listserv for information exchange, especially for new initiatives in our respective organization.

27. UICC RELATIONSHIP
Robert Burton and Nathalie Stahelin from UICC joined the meeting for this discussion

Robert Burton explained his role as the newly appointed UICC business leader for the "Member Support and Capacity Building" strategic direction. He noted that the Support and Capacity Building initiative is an important one as it supports the other 3 strategic directions (Tobacco Control, Primary and Secondary Prevention and Knowledge Transfer). Robert Burton reported that a 2 year plan must be submitted late October in the context of the UICC 5 year goals. He invited ICISG to play an active role in the development of the Support and Capacity Building strategy because of the key role that ICISG can play in its implementation. Other UICC initiatives where ICISG could contribute include COPES and the National Cancer Control Plan.

Nathalie S. indicated that the COPES program focuses on prevention, support, education for cancer organizations and workshop for Reach to Recovery. New distance learning modules are under development.

Robert Burton also outlined the National Cancer Control Plan. Its goal is to help populations create a plan relevant to them and advocate for its implementation. He referred to the 2nd edition of the National Cancer Control Programmes published by WHO. It was suggested that the first step would be to create an inventory of the areas of need (eg. cancer registry, CIS), country by country. UICC fellows would be a great resource for this effort. Another potential avenue would be to help countries develop advocacy skills. Catherine and Marion will develop an easy-to-use CIS assessment tool to help other countries identify areas of CIS need. Other suggestions for collaboration included a joint workshop with COPES and courses delivered by ICISG faculty. Future opportunities would be at the Global Conference 2004 (location to be announced in April 2003) or the next Asian Pacific conference in Bali in October 2003.

A discussion followed on the UICC Exchange Program. It was observed that the low participation by developing countries may be due to the complicated grant application. ICISG could provide assistance in completing the grant application to those who want to apply. Availability of corporate sponsorships could also be explored. Mary Anne and Anne will follow up the ICISG Exchange Program.

Catherine indicated that ICISG is looking for assistance from UICC for web development and financial support for participation at UICC conferences.

It was agreed that Catherine and Doreen will draft objectives for the Support and Capacity Building strategic plan and that ICISG would consider the opportunity of a conference in Bali or Melbourne.

28. AMERICAN CANCER SOCIETY PRESENTATION
Emily Pualwan from ACS joined the meeting for this discussion

Emily Pualwan outlined the primary activities conducted by ACS in the area of cancer information dissemination:

• Health content products are distributed primarily through the National Cancer Information Centre (NCIC) where 250 information specialists answer inquiries on the phone and email, 24 hours/day, 7 days/week. The specialists have an undergraduate degree in health related fields and nurses provide the second level of support. The specialists use the Cancer Information Database (CID), a resource developed by medical editors that is also on the ACS website.
  
• ACS website has many features including the CID, chat forum, survivorship topics, copies of publications and a on-line library
  
• ACS collaborates with other agencies, such as the NCCN and the NCI, to develop "consumer products" in English and Spanish.
  
• ACS has developed an on-line clinical trials matching tool. More than 3000 clinical trials are listed, patients can present this information to their doctor and enroll, as applicable.
  
• ACS offers a telephone smokers' helpline service
  
• ACS also collaborates with the media for cancer related news eg. CNN.

Emily Pualwan indicated that ACS could help with the translation of ACS literature in other languages. ACS has translators for English, Spanish and Mandarin. ACS can work with different cultural groups or countries to assist with content adaptation by providing expert review and editing in English. The document can then be translated locally. ACS documents have been translated in Malaysian, Arabic, Italian, Croatian and German. The challenge for ACS when using materials in other languages is ensuring the quality of the content.

A discussion followed on the potential areas of mutual interest and collaboration with ACS.

29. PROGRESS REPORTS - WORKING GROUPS

29.1 Website and membership
Anne distributed the draft ICISG membership list and the member's profile form for review. Board members will send a biographic paragraph and comments on the member's profile form to Anne before the end of September. Plans for the ICISG website include:

• What is ICISG?: ICISG poster (by Doreen)
  Mission, vision, objectives,
  Governance
  Board of Directors with biographic paragraph
  Nomination form for Board
  Voting form
• Meet our members: List of members with links to organization profiles
  Members' testimonials
• How to become a member: Minimum standards
  Types of membership
  Application process
  Member profile form
• ICISG forum: CIS needs assessment tool
  Exchange program
  Courses
  List of publications by members
• What's new: President's report
  Upcoming conferences
  Members in the news
  Meeting reports
• ICISG library: List of documents that can be shared (eg. job description, training plan, quality standards, evaluation tools)

Monika and Anne will develop the key points for the organization profiles.

The membership application process was discussed and it was agreed that membership should be as inclusive as possible. Once the member application form is received by the ICISG Vice-President, an email will inform the Board and UICC (Is the organization a member of UICC, other background). The ICISG President will send a letter of welcome and the new member will be listed on the website and included in the listserv.

29.2 Promotion and new members
Doreen will submit the name of associate members as she visits other organizations. It was suggested that Board members promote ICISG locally and in their newsletter. Chris will undertake the development of the ICISG logo.

29.3 4th Global Cancer conference
It was agreed that ICISG should be the subject of a plenary session at the next UICC Global Conference. Marion and Cora will start planning the content and Board members will send ideas to Marion and Cora. Catherine and Anne will send a letter to the UICC Organizing Committee 2004 recommending that ICISG prepare a CIS course and participate in a plenary session.

It was suggested that ICISG Faculty organize a course at the Bali conference in 2003. This would be an opportunity to test our CIS assessment tool and promote the ICISG exchange program.

29.4 Complementary and Alternative Therapies
Chris T. explained that as part of our role to educate callers, we need to increase our knowledge and resources on complementary and alternative medicine. Chris T. distributed the NCCAM brochure and presented literature on CAM. It was agreed that we should collaborate in a research project to find out the information needs and use of CAM among our callers (eg. subject of inquiry, previous use of CAM, complementary or alternative, whether the use of CAM is discussed with doctor, which type of CAM is used or of interest, perceived benefits of CAM). The results of this research project could be published. CAM could also be the topic of a course for ICISG members.

29.5 Exchange program
Mary Anne noted that she did not receive any response to her listserv message re exchange program. This program would benefit organizations that plan to establish a CIS. Mary Anne and Anne will contact UICC and suggest that the exchange program brochure be modified to include a fellowship in Support and Building Capacity. This initiative should be part of the strategic plan.

29.6 Supporting developing countries
This topic was not discussed in the absence of Richard E.

30. NEXT MEETING AND ADJOURNMENT
The location for the next in person meeting has not been confirmed; a potential location might be Toronto at the time of the Psycho-oncology conference in April 2003. A conference call will be planned for the fall.

Catherine indicated that she would draft a timeline for the various actions identified during the meeting. She thanked all present for their participation and adjourned the meeting at 6:30PM.

Prepared by Anne Vézina, August 30, 2002.

Last Updated: 8 January 2008