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INTERNATIONAL CANCER INFORMATION SERVICES GROUP
2003 Annual Working Meeting of the ICISG Board

Dolphin Square Hotel, London, England • September 1-2, 2003 • 9:00-17:00

ACTIONS ARISING FROM THE MEETING

Presentation on cancer organizations

• Catherine will distribute the Macmillan cancer website evaluation.
• Claudia will distribute the iMAC evaluation of cancer education delivery to patients (verbal, print, audio/video)
• Chris will post the link to Cancercare internet lectures and to the NCCAM factsheets for cancer treatment on the listserv.
• Marion will post the result of the NCI survey on CIS caller needs for other types of service on the listserv.
• Anne Vz will post the highlights of the Canadian Cancer Society’s CIS user survey on the listserv.

UICC conference

• Doreen and Catherine will lobby their contacts for a UICC conference to be held in 2004.
• Catherine, Marion and Cora will submit a course outline for track 3 and 4 of the 2006 conference. Board members will sign-up with Marion for a specific topic before the end of November.
• Catherine will inquire about the membership of the Planning Committee for the 2006 UICC conference. She will ask Robert Burton to be the presenter for the ICISG plenary session.
• Marion and Mary Anne will update the How To Manual with comments and send an electronic copy to Anne Vz for pilot testing with Korean and French visitors.

Logo design

• Board members will discuss logo #4 with their respective team and provide feedback to Chris.
• Chris offered to draft logo guidelines and design a ICISG power point template.
• Doreen will inquire about registering the logo.

Website

• Catherine will arrange for the registration of the ICISG website URL www.icisg.org
• Chris will supply picture of CIS information specialists for the website.
• Board members were reminded to send their bio with a picture to Anne Vz
• Doreen will send suggested disclaimer for linking to other websites and how to get back.
• Anne Vz will develop the content for the website for the launch date in January 2004.

Achieving our goals

• Mary Anne will submit the members list to Anne Vk, who will communicate the latest instructions to members on how to subscribe and unsuscribe.
• Anne Vk will cross-reference listserv subscribers with the ICISG members list.

Sponsorship

• Catherine will prepare the next draft of the sponsorship proposal.
• Doreen will approach the Bill & Melinda Gates Foundation for an organizational grant.

Also see Action arising out of the Annual General Meeting September 1, 2003.

MEETING

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

2. PRESENTATION - BOARD MEMBERS’ ORGANIZATIONS

2.1 Macmillan Cancer Relief, London, England
Peter Cardy, CEO of Macmillan Cancer Relief, congratulated the ICISG board for its initiative and progress to date. He emphasized the key role of ICISG in raising awareness for cancer information supported with adequate resources and high quality service delivery. Mr. Cardy gave an overview of Macmillan Cancer Relief:

• Founded in 1911 by Douglas Macmillan, whose father died of esophageal cancer.
• Recognized need for financial assistance and provided goods instead of money.
• Campaigned for improvements in treatment and cancer care. Developed programs for nurses in palliative care and hospices.
• Over the years, Macmillan Cancer Relief raised capital costs for more than 40 hospices.
• Implemented concept of senior specialist nurses working as an educators. Three year seed funding is then supplemented by the National Health Service (NHS) or host organization There are now more than 2000 nurses and 1000 healthcare staff today.
• Provides funding for cancer treatment centers and information centers with NHS.
• Macmillan Cancer Relief acts as an agent for change. It raises €120M from donations per year and is supported by 550 staff and 13,000 volunteers.
• Catherine mentioned that an evaluation of 10 cancer websites will be published shortly. The results of the study will help define better navigation practices for cancer information websites. Catherine will post it on the listserv.

2.2 Anti-Cancer Council, Victoria, Australia
Doreen provided a summary of the various programs offered by the Anti-Cancer Council:
• Based in Melbourne, it offers 14 core programs with 33 staff. Programs include cancer information, support, living with cancer, speakers bureau, cancer connect (parents and caregivers), look good feel better, sexuality and financial assistance.
• Established service delivery standards and links with other states in Australia
• Developed a communication skills workshop for healthcare providers
• Currently provides training for a CIS in New Zealand.
• Cancer Helpline responds to 50,000 inquiries/year and established a multi-lingual service to answer inquiries in any of 200 languages.
• Involved in research project to test follow-up calls to cancer patients.

2.3 Danish Cancer Society
Anne Vk is now working in advocacy programs on behalf of cancer patients:
• The communication skills training program is now compulsory for graduating physicians (doctors to doctors).
• Developed a brochure on the availability of treatment options, patient rights, second opinion.
• Created a leaflet on men support groups offered in the hospital
• Another brochure includes 20 psychosocial clinical practice guidelines and recommendations based on published studies regarding the impact of doctors’ behaviour and communications on patients.
• New website with cancer information also supports chat rooms (works well for men with family member with cancer).
• Tested a “mobile” CIS to try to reach more men (40% of callers after 3 years).

2.4 German Cancer Research Centre
Monika read a letter from Hilke announcing her retirement and resignation from the ICISG Board. Hilke sent her best wishes and the Board acknowledged her contribution to the CIS in Germany and to the ICISG.

Founded 20 years ago, the German Cancer Research Centre’s CIS is funded by donations and the government. Monika explained how the German Cancer Information Centre has to secure its niche due to political changes and new competition, such as patients’ right to cancer information and the requirement of insurance companies to provide cancer information.
• CIS has been in operations since 1996, and recently initiated a breast cancer disease management program.
• Recently added a hotline on pain and fatigue (with Johnson and Johnson)
• Writing brochures for the Cancer Center.
• Planning an information service for physicians as part of a comprehensive cancer center funded by the Ministry of Education (includes email, internet, training modules).
• Developed email service because of saturated phone lines
• Planning a user survey in the fall

2.5 Dutch Cancer Society
Cora gave an overview of the Dutch Cancer Society’s CIS:
• Established 25 years ago, it is operated by 30 staff
• Given the competition, the Dutch Cancer Society’s CIS is looking at new strategies, policies and funding. Need to establish organization as first place to go to find services in the community. Facing issues of recognition and differentiation from government agencies and hospital services.
• Integrating special programs for patient education (brochures, phone, internet) and trying to raise awareness among young people.
• New program on spirituality and cancer.
• Recent campaign focused on cancer in the family. This included promotion through door-to-door campaign, special activities, different hours for CIS and a conference on heredity.
• Prevention messages are now enhanced by an interactive approach on the internet
• Conducted a survey to find out cancer patients preference for follow up information at home.

2.6 iMAC
Claudia explained that iMAC, founded in 1997, was the first organization in Italy to provide cancer information. It is a member of the ECL and advocates for patients rights (especially in the work place).
• Activities started with the production of booklets
• Government provides funding for support helpline with 2 psychologists.
• Cancer information desks are now located in 4 cancer centers.
• Funded a study in 20 cancer centers involving 380 patients to assess the effectiveness of cancer education (verbal information only, verbal +print, verbal + print + audio/video tapes). Claudia will post the results of the study on the listserv, when completed.

2.7 National Centre on Complementary and Alternative Medicince, US (NCCAM)
Chris explained that NCCAM is conducting rigorous studies on the effectiveness of CAM. It is developing evidence-based information for patients, especially cancer patients. NCCAM is collaborating with Macmillan; a new fellowship in integrated medicine is funded by Prince of Wales Foundation. Other key points included:
• NCCAM is focusing on the whole person, along the entire continuum of care (not just after treatment).
• NCCAM conducted a survey on CAM information needs of cancer patients (patients find CAM information from the internet or word-of-mouth from other patients, they do not have tools to evaluate quality of information and they do not talk to their physician). This survey will provide a baseline for an education program and new tools to help cancer patients make decisions.
• NCCAM website has factsheets on CAM and cancer treatment, with questions to ask on different therapies. Chris will send the link to the listserv.
• CancerCare internet lectures provide easily accessible forum for cancer education. Chris will post the link on the listserv. A lecture on CAM will be webcast on October 6.

2.8 Marion Morra Consultant
After more than 20 years with the NCI, Marion left 6 years ago to become a consultant. Her book for cancer patients “Choices” will be published shortly. Marion observed that patients are overwhelmed with too much information; quality and relevance are key. Her book includes a section on searching on the internet. She expressed concern that the US does not have a nation-wide cancer plan. In Mary Anne’s absence, Marion gave a brief overview of NCI activities:
• NCI has a research consortium (with Al Marcus) to study how health communication can impact behaviour (eg prevention) and how decision-aids might help cancer patients with breast, prostate and colorectal cancer.
• NCI conducted a study on the type of service CIS callers might like to receive (eg. email conversation, call back, help to navigate internet). It was noted that internet users still call CIS. Marion will distribute the results of the survey on the listserv.

A brief discussion followed on the need for a navigator role, human touch and the importance to provide a list of questions to ask the doctor.

2.9 Canadian Cancer Society’s Cancer Information Service
Anne Vz gave an overview of the CIS activities in Canada and presented the results of the recent user survey. She indicated that a literature review suggested a 90% level of satisfaction as the benchmark for this type of service. The results were analyzed based on three client types (cancer patients, family and friends and the general public). Several survey questions focused on how participants were helped by their call to CIS. The merits of “cost per call” were debated and all agreed that this was not an appropriate metric to evaluate a CIS.

3. ANNUAL GENERAL MEETING OF THE ICISG BOARD
Refer to minutes provided under separate cover

4. ICISG FACULTY DEVELOPMENT AND COURSE PLANNING
Catherine indicated that the plans for the 2004 UICC conference were uncertain and announced the dates for the 2006 UICC conference in Washington DC (July 9-13, 2006). A discussion followed on various approaches to ensure that ICISG is represented on the Planning Committee and is part of the program (plenary and workshops). Catherine will inquire about the membership of the Planning Committee for the 2006 conference. She will ask Robert Burton if he would be the presenter for the ICISG plenary session. Doreen and Catherine will lobby their contacts for a UICC conference to be held in 2004.

Marion and Cora tabled a draft outline for proposed plenary and workshop sessions for the UICC conference. Comments were provided and each Board member will sign-up for a specific topic. It was agreed that Catherine, Marion and Cora will submit the course outline for track 3 and 4 of the 2006 conference. The 2004 conference, if not cancelled, will give us an opportunity to pilot test part of the course.

It was suggested that presenters would use a power point template with their respective logos and the new ICISG logo.

5. CIS HOW TO MANUAL
Marion distributed the last draft outline of the How To Manual. This will be a web-based tool which will link to sources provided by ICISG members. The main sections are:
• Contextual issues
• Conducting a basic overview assessment
• Determining the scope of services to be offered
• Writing a strategic plan
• Plan for building services

Marion and Mary Anne will update with comments and send an electronic copy to Anne Vz for pilot testing with Korean and French visitors.

6. ICISG LOGO & DESIGN
Chris presented the short list of proposed logos. Logo no. 4 was generally preferred by the Board. Board members will discuss logo no. 4 with their respective team and get back to Chris. Doreen will inquire about registering the logo. Chris offered to draft logo guidelines (colour, black/ white) and design a power point template.

7. ICISG WEBSITE
Jasper Smith, from Sparks, joined the meeting to present the new website design. Catherine expressed appreciation on behalf of the Board for the support generously provided over the years by Sparks, and especially by Jasper. Jasper expressed interest in continuing to provide his services and to host the ICISG website.

Jasper presented a quick view of the proposed new design for the website. Participants discussed the integration of the new logo and a site map. The search feature, drop-down menu for the list of members and the password bulletinboard will not be implemented at this time. It was agreed that the new URL www.icisg.org will be registered and remain accessible from the UICC website. Chris will supply picture of CIS information specialists. The ICISG email address was suggested as info@icisg.org. The listserv address will be provided for members. Doreen will send suggested disclaimer for linking to other websites and how to get back.

Anne distributed a draft outline for the content of the new website. The preliminary content will be developed further and new sections will be added (contact us, linking policy, disclaimer, home). Board members were reminded to send their bio with a picture. The membership list will include a brief overview of the organization (in English) with a link to the organization’s website for more information. It was suggested that CIS documents and tools not be made available directly from the ICISG website. Outside organizations should be encouraged to contact any of us for more information. Board members publications will be added (including abstract for past UICC conferences). A map with CIS links was suggested. Anne Vz will check key points for usability standards. The estimated launch date for the ICISG website is January 2004.

8. ACHIEVING OUR GOALS

Listserv
Following a brief discussion on the listserv and how little it is currentlyused, Board members agreed to be more involved in posting CIS information on the listserv. Mary Anne will submit the members list to Anne Vk, who will communicate the latest instructions on how to subscribe/ unsuscribe. Anne Vk will also cross-reference listserv subscribers with the ICISG members list.

Exchange program
At this time, this initiative is considered of lower priority and will be followed-up by Mary Anne and Anne.

Membership
It was agreed that we seek out new members, starting with UICC members. An article in the UICC newsletter on ICISG might generate interest.

9. SPONSORSHIP PROPOSAL FOR 4TH CONFERENCE
Catherine tabled a draft sponsorship project proposal for 2006. The final document will include an overview of ICISG. Suggestions for sponsorships are:

• Preconference workshop
• Advance course during conference
• Exhibit package
• Travel for Faculty
• Travel expenses for organizations featured in case studies of countries that have been helped.

Catherine will prepared the next draft of the sponsorship proposal. Doreen offered to approach the Bill & Melinda Gates Foundation for an organizational grant.

10. OTHER BUSINESS
During the meeting, several topics were identified for future discussion:
• Pharmaceutical companies seeking affiliation with CIS in several countries
• Sensitivity of providing cancer information while seeking donation support.

11. NEXT STEPS AND ADJOURNMENT
Catherine encouraged each Board member to start following up on their respective action before minutes are distributed. The meeting was adjourned at 15:00 and followed by a visit of the Macmillan Cancer Relief offices.

Prepared by Anne Vézina, November 2003

Last Updated: 8 January 2008