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INTERNATIONAL CIS GROUP
Board of Directors Meeting
April 23-24, 2007
AIMaC Offices, Rome

Attended by:                 Ingrid Aubry (April 23)
                                    Mary Anne Bright
                                    Francesco De Lorenzo (April 24)
                                    Silvia Den
                                    Catherine Dickens
                                    Roshini George
                                    Cora Honing (April 23)
                                    Marion Morra
                                    Monika Preszly
                                    Chris Thomsen
                                    Anne Vézina

Guest:                          Laura Del Campo (AIMaC)
Regrets:                       Doreen Akkerman
Ana Olivera 

ACTIONS FROM THE MEETING           

Governance

• Anne, Chris and Doreen will update the minimum standards and operation guidelines and review in Washington in September
• Anne to develop a workplan for May to August 2008
• Anne and Chris will revise wording of mission to clarify that ICISG’s mission is to “support”
• Chris will draft the 2006 annual report for posting on the website.

Strategic plan

• All directors will revise their section of the strategic plan based on comments from the meeting and submit to Anne and Chris for final editing by May 15.

Memberships

• Anne to follow-up with Irene regarding Russian course participants (and nurses)
• Anne and Irene will follow up with associate members to find out about progress toward starting a CIS.

Sponsorships

• Ingrid and Mary Anne will try to identify a foundation with an international focus

UICC World Cancer Congress

• Anne and Chris will develop the abstract for the plenary presentation
• Roshini will inquire about ACS sponsoring the ICISG AGM and reception
• Consider submitting an abstract to present results from survey of members of ICISG
• Silvia and her staff will help with materials and administrative support for the course and the exhibit.

CIS Course

• Roshini and Mary Anne will develop core categories for developing a budget for operating a CIS.
• Marion, Monika, Roshini will establish a working group and start developing the course Level 2.

Collaborations

• Anne and Chris will write Cora to express interest in collaboration ECL related to cancer information service.
• Cora will pursue inviting a ICISG representative to make a presentation at an ECL meeting.
• Cora will ensure that the ECL website has a link to the ICISG website.
• Anne and Chris will send an announcement to ECL re plans for UICC congress, article in ECL newsletter.

• Chris and Anne will ask Ana for UICC information on other cancer leagues that already exist, especially in Asia
• Anne will meet with Nancy Lins in May regarding ICISG potential role with ACS international.
• Roshini will inquire about the ACS survey results.
• Catherine will provide a contact name for Cancer Research UK
• Anne will contact NCI’s International Office
• Anne will ask Doreen if there are other cancer groups in Australia and South-East Asia
• Anne to look into AORTIC as a possible group with which to collaborate.
• Mary Anne and Roshini will explore potential link with Cancer Planet and ICISG.

ICISG Website

• Mary Anne will arrange to have a PDF of the ICISG article sent to Irene for posting on the ICISG website.
• Irene will review and update the list of cancer information websites in other languages

Communications / Publications

• Chris/Mary Anne to write a press release re workshop on clinical trials
• Marion will send the final version of the ICISG article to board members
• Roshini and Mary Anne to develop an abstract on CIS stats with ICISG members (10 question survey)

1. OPENING REMARKS                       
Anne V welcomed everyone and noted regrets from Doreen and Ana. On behalf of ICISG, Anne  thanked AIMaC for their generous hospitality.

Anne gave an overview of the objectives for the meeting and the agenda was amended. The objectives are to:
1.  Discuss the long term viability of ICISG
2. Review the strategic plan
3. Plan for UICC 2008, specifically course level 1 and level 2

2. APPROVAL OF MINUTES OF MEETING
The minutes of the conference call of March 7 were approved without comments.

3. RELATIONSHIP WITH UICC
Anne indicated that the final version of the MOU between ICISG and UICC had been sent for comments to ICISG board members. No comments were received and the MOU was sent to UICC for signature. Anne and Chris will meet with Isabel Mortara in Geneva at the end of the week and sign the MOU to continue the UICC-ICISG collaboration.

4. ROUND TABLES WITH UPDATES FROM BOARD MEMBERS
Board members provide a brief update on their respective organization and CIS.

Cora / Dutch Cancer Society

• Changes to the CIS: moving toward a service targeted at cancer patients and their family only (will include early detection. Prevention inquiries will be referred to the website, audience tends to be younger (90% have access to internet).
• Implications on the information specialists and quality
• Moving away from print materials to web-based communications (web TV channel)
• Active in lobbying for prevention with the government, especially with tobacco control, working toward smoke-free public areas.

Monika / KID

• CIS  is now fully integrated within the German Cancer Research Centre
• New toll-free number accessible everyday from 8am to 8pm throughout Germany, installed voice mail
• Affiliation with an organization to develop a promotion specifically for prostate cancer (marketing, print materials) because so few men are calling.
• New hotline for prostate cancer sponsored by an association dedicated to the promotion of cancer information in Germany (proKID e.V.)
• Started information fact sheets (eg. clinical studies, treatment options, HPV vaccination, community services, pain, financial assistance/insurance, how to search on the internet). These were distributed at a patient conference. Facts sheets are also available on the KID website.

Silvia / Swiss Cancer Society

• CIS staff by 7 nurses with German, Italian and French
• Topics range from prevention to palliative care
• CIS also organizes patient conferences
• Planning to develop fact sheets in 8 languages
• CIS also includes a team for the new tobacco cessation helpline, evaluation will be planned.
• Monday to Friday, 10am to 6pm
• Brochures are available as PDF on the website
• Received education grants from pharmaceutical companies for specific brochures.

Mary Anne / National Cancer Institute

• Reported on the clinical trials workshop funded by the Italian and American Ministries of Health.
• NCI wrote 11 articles that will be published in a Journal of Cancer Education’s monograph later this year. This includes a paper on ICISG.
• CIS budget has been reduced and Mary Anne is developing the next concept for the future. Mary Anne has recruited an advisory panel to help define the concept.
• Offices of CIS and education/special initiatives will be merging to become the Office of Communications and Education
• CIS and CDC have been working since 2004 to create a network of smoking cessation helplines which generated over 660,000 inquiries since its inception.
• CIS’s partnership program is very involved with ACS and CDC at the regional level in every state
• NCI is launching a new Spanish website, the Miami CIS office to respond to Spanish email.

Marion

• Marion was also a speaker from the US and from ICISG at the clinical trial workshop in Rome. She presented “What Patients Need to Know About Clinical Trials”.
• Marion is part of the CISRC team headed by Al Marcus conducting a research study with patients who call the CIS. Three projects will contribute to knowledge about decision-making related to breast and prostate cancer.  Protocol will include sending a decision-aid on CD-ROM with/without a follow-up call from CIS.
• Marion has been involved in the JCE monograph to be published.
• Marion will be assuming the Chair of the American Cancer Society National Board in October.
• CDC has been funding each state in the US to develop comprehensive cancer control plans. The steering groups for these projects include representatives from the ACS, NCI and CDC (Leadership institute).

Ingrid / Institut national du cancer

• The CIS started by the Ligue de lutte contre le cancer has been taken over by the institute
• Inquiry process includes 2 levels (first level: information specialist for information, second level: support inquiries are transferred to the Ligue). Level 1 team does the triage for the Level 2 team.
• New team of 3 information specialists and one supervisor under going training
• CIS is aimed at patients and their families, Monday to Saturday 8am to 8pm
• Ingrid is overseeing the information database. Content written by members of the institute.
• Approximately 100 inquiries per day.
• CIS is part of the communications and public education department

Catherine 

• Catherine informed the group of the recent changes in the UK cancer arena, specifically with Cancer Link and McMillan Cancer Relief, Cancer Bacup and Cancer Research UK.
• Catherine is doing consulting work for a Patient Information Forum in the UK
• Catherine is a trustee for the Sexuality and Relationship Therapy group.

Chris /NCCAM

•  One year ago, Chris helped organized a workshop with AIMaC on complementary and alternative medicine.
• Chris has been working on an information campaign on CAM for the public. 66% of the population uses CAM, and 60%-80% of cancer patients. Cancer patients do not tend to discuss CAM with their doctors.
• The education campaign “Time to talk” with an “ask” (healthcare professional) and a “tell” (patient) campaign is being rolled out.

Laura/AIMaC

• New toll-free number Monday to Friday from 9AM to 7PM (phone, email).
• Information specialists (4) are mostly psychologists who provide support over the phone. The staff also includes an oncologist and a lawyer to help with legal issues, especially related to working conditions. There are still issues related to the lack of awareness on the new patient rights.
• 29 booklets are available on the AIMaC website.
• More than 1 million visitors to the AIMaC website last year.
• Opened 16 information points in the main cancer centres in Italy.
• The promotion campaign called “With the cancer, Against cancer” was recently launched.
• New website being launched regarding services in the community within Italy, with search tools. This resource will also be published and distributed to healthcare professionals.  www.oncogouida.it
• AIMaC is funding scholarships in psycho-oncology, and is part of an initiative to reduce duplication and maximize synergy between cancer organizations in Italy.
• Laura gave an overview of FAVO, a federation of the 500+ volunteer cancer organizations in Italy, whose goal is to represent the interests of cancer patients to enhance their quality of life.

Roshini / American Cancer Society

• CIS call centres were consolidated into one a few months ago. CIS management is starting to look at strategic issues.
• Call volume has stabilized, callers are more informed and the topics are more complex.
• Inquiries are starting to focus more on end of life issues. ACS is developing some materials and the possibility of triaging to more experienced information specialists. Looking at operational efficiencies of the various approaches, including specialized training (e.g. clinical trials, health insurance).
• Information specialists are given responsibilities to work off-line or on special projects. ACS is developing an awareness campaign on the need for health insurance for cancer patients.
• Trying to promote CIS on the website as the web traffic continues to increase. A person can send an email to request CIS to call back at a specific time.

Anne /Canadian Cancer Society

• Reorganization of the national office, Anne’s portfolio is now Corporate and International Affairs. As she will be phasing out of her role as CIS national director, she will continue as the President of the ICISG.
• An external evaluation will start in May with a consultant and the new management model will arise from the results of the evaluation. ICISG board members may be contacted by the consultant.
• CCS print and web content are under the Cancer Control Policy department.
• CIS will participate in a research study which will follow the Australian study started a few years ago.
• CIS promotion will be targeted at healthcare professionals for referrals to cancer patients and family. Other initiatives include exploring collaboration with cancer agencies (registries) to reach recently diagnosed cancer patients.
• CIS will be conducting a user survey in October to assess the motivation for the use of CIS vs. other sources of cancer information, satisfaction, actions taken as a result of the call and overall impact.
• CCS adapted the sexuality brochure from Australia and is developing a CAM brochure based on the NCCAM’s brochure.
• Community service database interface was redesigned on www.cancer.ca

5.  COLLABORATIONS WITH ECL AND ACS INTERNATIONAL

5.1 Collaboration with ECL
Cora provided an overview of the ECL and its membership. She explained that the size of the member organizations and their respective scope are varied. ECL has a head office in Brussels, with a small secretariat.  The general assembly includes 29 members under the leadership of a board of 7 directors (with Cora as the President). Members pay a membership fee. The website will be launched in one month.

ECL leads lobbying efforts in cancer control on behalf of its memberships. Round tables have been initiated on topics of mutual interests such as relationship with pharmaceutical industry. ECL is also setting up initiatives for sun safety, early detection for colorectal cancer, HPV vaccine etc. - ECL is integrating patient support and patient information in one working group.

ECL had started to organize a cancer information service conference every 2 years with EU funding. Anne Vinkel from Denmark will lead the patient support working group. The ECL welcomes the exploration of potential relationship. The ECL board of directors agreed that ECL could facilitate a conference on cancer information service (with logistic support by ECL secretariat). This conference would be accessible by ECL and non-ECL members.  Monika, Cora and Anne Vinkel will meet in Copenhengen in June to discuss further.  ECL would also consider inviting ICISG members to their annual meeting.

Other possibility would be to focus the collaboration with ECL members who have a helpline. There might be a possibility to develop a MOU similar to the one with UICC.  We could plan to have a joint meeting in Geneva in 2008.

Last Updated: 8 January 2008