The world of cancer information
INTERNATIONAL CANCER INFORMATION SERVICE GROUP
BOARD OF DIRECTORS
April 24-25, 2006
Heidelberg, Germany
Catherine Dickens
Cora Honing
Monika Preszly
Chris Thomsen (VP)
Anne Vézina (President)
Ex-officio
Ingrid Aubry
Ana Olivera (April 25)
Regrets:
Marion Morra
Doreen Akkerman
Philippe Mourouga
Mary Anne Bright
Irene Miller
Enclosures distributed prior to the meeting
Agenda
Minutes of conference call on March 22
Draft agenda for course on how to start a CIS
Draft Power Point presentation slides
Draft course workbook
ACTIONS ARISING FROM THE MEETING
- Next conference call is scheduled for May 24 at 8AM (Toronto time)
- For the July UICC meeting, each board member will send the name and phone number of their hotel in Washington to Irene.
Re: Governance
- Anne will send the preliminary CIS program for the UICC Congress with the minutes
- Anne will clarify expectations from directors from the board to the governance section on the website.
- Anne will invite Ana to join the ICISG board as an ex-officio member for the duration of the collaboration with the UICC.
- Anne will ask Mary Anne if more ICISG pins can be produced for distribution at the AGM
- Chris will arrange for ICISG certificates for each member to be distributed at the AGM
- Anne will reserve a meeting room for the AGM and the board of directors
- Directors will nominate candidates from other cancer organizations to fill the 3 vacancies.
- Anne and Irene will revise the membership application form after July to gather additional information.
Re: How to start a CIS course
- Chris will prepare the name tags for the course participants.
- Chris will circulate the revised power point presentation after editing on the UICC/ICISG template and final review with Marion.
- Mary Anne will provide a taped call as a sample (easy to understand) for the course
- Marion will include the transcript of the taped call in the workbook
- Catherine/Doreen will finalize the exercise for the scope of service/strategic plan section and send to Marion
- Cora/ Chris will write an exercise for the staffing section for participants (job ad for an information specialist) and provide tips for facilitating the exercise at each table.
- The call monitoring exercise will use the taped call discussed earlier for a group exercise based on the monitoring checklist provided in the presentation and workbook.
- Marion/Mary Anne will follow up with Terry Music/ACS for the resources section
- Ingrid will revise and send the technology exercise to Marion
- Anne/Chris will discuss the proposed changes to the evaluation form with Marion
- Chris will arrange for the design of the cover page and the assembly of the workbook.
Re: CIS Tool Box
- Chris will look into small changes to the web-based version of the CIS Tool Box as per suggestions made
- Chris, Ana and Anne will review the content for the promotional CIS Tool Box one-pager.
- Chris/Catherine will write the CIS Tool Box article for the UICC enewsletter by May 22.
- Chris, Ana and Anne will discuss the details for the launch and press conference
- Chris, Ana and Anne will discuss the guest list
- Ana/Chris will prepare a press release and media advisory for July 5
- UICC will prepare the UICC/ICISG press kit
- Ana will finalize the power point template based on comments
Re: Exhibit, pamphlet
- Chris will provide a laptop with already loaded with ICISG website and the CIS Tool Box
- Anne will check if Irene can “man” the booth during the congress.
- Chris will organize the set up and dismantling of the exhibit booth
- Anne will ask Angus for a pamphlet PDF for the ICISG website.
- Chris will arrange for the printing of the ICISG pamphlet, with numbers to be confirmed
Re: CIS presentations
- Anne will ask Ruth if the CIS 1 session can be rescheduled at 3:30pm
- Board members are responsible to finalize their presentations and send a copy to the facilitators of their session
- Anne will send the draft power point to David Hill by the end of May
- Anne and Chris will discuss the possibility of editing the NCI/CIS video
MEETING - APRIL 24
1.0 Opening remarks and approval of the minutes
- Anne welcomed everyone and thanked Monika for hosting the board meeting in Heidelberg.
- Monika introduced the DKFZ and extended regrets from Dr. Gebest.
After the overview of the meeting agenda and objectives, the minutes of the last conference call held March 22, 2006 were approved without comments.
2.0 Round table update from each organization
Anne invited each director to provide an update on their organization’s activities. Highlights of the updates were as follows:
KID - Germany
- A new book on questions and answers about cancer was recently published by DKFZ/KID
- Recent media coverage (TV) about cancer generated more than 1800 calls to KID.
- Monika, DKFZ, Israel Cancer Society and Germany Cancer Society’s representatives attended UICC Patient forum in Turkey at the beginning of April which included 350 participants (with doctors, patients, family and friends). This was the first forum of this kind in Turkey and representatives from the Turkish Association for Cancer Research and Control will attend the ICISG pre-congress course.
United States
- NCI/CIS celebrated its 30th anniversary – ICISG was represented with Anne’s presentation highlighting the role of NCI/CIS as the first CIS in the world.
- Representatives from Japan who visited the NCI recently will attend the ICISG pre-congress course
- NCCAM produced a new brochure on the mandate of the organization (distributed at the meeting)
- Chris reported on the new partnership between Italy and the US government on various scientific projects. It includes three conferences/workshops (non-conventional treatments for cancer patients, cancer clinical trials and survivorship). Chris reported on the advocacy work done by AIMaC in representing cancer patients for disability insurance.
France
- A press conference on April 27 will highlight the 3rd anniversary of the French cancer plan
- The National Institute of Cancer is instrumental in the upcoming non-smoking law in France
- The CIS demand has decreased and a new promotion plan is in progress
- Ingrid reported on her visit to Morocco regarding the preparation of a cancer awareness campaign and the establishment of a CIS. Ingrid promoted the work of ICISG and the website as a source of information on how to start a CIS.
Netherlands
- Cora reported on the changes in structure and strategies of the Dutch Cancer Society which will focus on smoking cessation and early detection programs, with specific performance targets.
- Patient education will focus on helping patients, family and friends to make decisions about cure and care. Information about prevention will be on the internet.
- The Cancer Helpline will focus on patients and relatives and expand cancer information through the internet, integrating patients’ testimonials with cancer information (starting with breast and prostate cancer)
- A national tobacco control program was launched with other health agencies and the Ministry of Health.
United Kingdom
- Catherine reported that the UK is developing its second cancer plan – with information, communication and choices as the main themes. This includes health lines, internet and a new health direct service.
- Catherine is involved in the Patient Information Forum (PIF), a network bringing together various sectors (charities, social enterprises, community groups, pharmaceutical companies, health agencies including cancer) as well as agencies disseminating health information through helplines and the internet.
- In the UK, the cancer area is influencing other health groups in establishing various models for information delivery.
- Catherine is a co-author of an upcoming publication on literacy.
Canada
- The newly formed Canadian government will fund the Canadian Strategy for Cancer Control.
- Anne reported on the Canadian Cancer Society priorities and programs
- CCS just completed a website redesign, with more exposure given to CIS
- CIS demand increased by 10% since the beginning of the current fiscal year.
Summary
Participants acknowledged the common issues in each country, such as cancer organizations reassessing their cancer information programs. ICISG can play a role in articulating the unique role and benefits of a cancer information service to support its members.
3.0 Governance
3.1 Nominations
Anne reviewed the upcoming nomination process for the 3 vacancies of the board of directors.
She noted that a small paragraph on expectations from each director was added to the nomination form to help candidates assess the time commitment. Anne will also add these expectations to the governance section on the website. Possible candidates from other cancer organizations were suggested for nomination. Each director will make a solicitation. It was agreed that for the duration of the collaboration with UICC, Ana Olivera would be invited as an ex-officio member of the ICISG Board.
3.2 AGM
Anne noted that the AGM is tentatively scheduled for Tuesday July 11 at 1:30PM, depending on the room availability. Anne will ask Mary Anne if more ICISG pins could be made. Chris will arrange for ICISG membership certificates to be made and distributed at the AGM.
3.3 Membership
Anne noted some discrepancies on the membership application form and she will revise with Irene after July.
4.0 Review of How to start a CIS course presentation
Anne reported on the list of participants for the course (later updated by Ana). The total is now 29 participants from various countries. Chris will prepare the name tags for the course participants. Anne clarified the role and responsibilities of each faculty member and emphasized the limited time for each presentation.
4.1 Power point presentation
The draft power point presentation was reviewed and changes were suggested. Chris will circulate the revised power point presentation after editing and final review with Marion. Actions items were identified as follows:
- Mary Anne will provided a taped call as a sample (easy to understand)
- Marion will include the transcript of the taped call in the workbook
- Catherine/Doreen will finalize the exercise on the scope of service/ strategic plan section and send to Marion
- Cora and Chris will write the staffing exercise (sample job ad for an information specialist) and provide tips for facilitating the exercise at each table.
- The call monitoring exercise will use the taped call discussed earlier for a group exercise based on the monitoring checklist provided in the presentation and the workbook.
- Marion/Mary Anne will follow up with Terry Music for the resources section
- Ingrid will revise and send the technology exercise to Marion
MEETING – APRIL 25
4.2 Course workbook
The draft workbook was reviewed. It was suggested that the workbook include tabs based on the sections of the course, similar to the order of the power point presentation. Chris offered to design the cover page and will arrange for the assembly of the materials for the workbook. The ICISG pamphlet, the CIS Tool Box one-pager and the CIS program will be inserted in the pocket of the binder.
4.3 Evaluation form
The draft evaluation form was reviewed and it was suggested that the form be shortened to fit on both sides of a page, and that format include many boxes (yes, no, excellent etc…). Comments on the evaluation form content included:
Workshop
Meeting objectives
Evaluation for each section of the workshop
Exercises
Format that was most useful
Participant expectation
What you liked the most
What was missing
Other comments (e.g. What would you change)
Follow-up
Next step you plan to take
How can ICISG help
Anne and Chris will review with Marion.
5.0 Review of CIS Tool Box
Chris provided a live demo of the web-based CIS Tool Box. She reminded the group of how user will access this resource from the UICC and the ICISG websites with a password after a quick registration. The group discussed the opportunity of recruiting new ICISG members from users of the CIS Tool Box. Chris will review the Tool Box registration process and check if the template has a checkbox to identify if the user is a member of ICISG or UICC. There will be a link to the membership form on the ICISG website for those who are interested in joining.
The group was very appreciative of the work done by Chris, Mary Anne and their contractor to develop this resource. Suggestions included making the UICC and ICISG logo as links, including the date on each page and, if possible, adding both logos on print-outs.
6.0 Exhibit booth
Anne and Chris reviewed the logistics regarding the exhibit booth. Chris will provide a laptop already loaded with ICISG website and the CIS Tool Box. Anne will see if Irene can man the booth during the congress. Chris will organize the set up and dismantling of the exhibit booth.
Materials to be distributed at the exhibit booth will include:
- ICISG pamphlet
- CIS Tool Box one-pager
- CIS program
- Other materials from board members’ organization
7.0 ICISG pamphlet
Anne presented the draft ICISG pamphlet and comments were as follows:
- First sentence – edit “educating” (see suggestion by Catherine)
- Pamphlet to have yellow words same a banner
- Globe to be a bit smaller
- List of member countries on the back panel
- Include a mention of collaboration with UICC
- Date and copyright
Anne will ask Angus to supply a PDF for the ICISG website. Chris will arrange for the printing, with numbers to be confirmed in June.
8.0 CIS Tool Box promotion
8.1 One-pager on CIS Tool Box
Ana gave an overview of the typical UICC flyers. Chris, Ana and Anne will review the content for the CIS Tool Box one-pager.
8.2 Article for UICC June e-newsletter
Ana confirmed that the deadline for the article on the CIS Tool Box for the UICC June e-newsletter is May 22. Chris and Catherine will write the CIS Tool Box article by May 22. (Chris did preliminary work with Ana on the following day).
8.3 CIS Tool Box Launch
Ana confirmed that the press conference for the launch of the CIS Tool Box is scheduled for July 8 at 8:30AM – 9AM. UICC will organize the room rental and the press conference. Chris, Ana and Anne will discuss details for the launch. The proposed overview is as follows:
Press conference will include speeches from UICC and ICISG. Proposed key messages are:
Importance of cancer information (UICC)
Collaboration between UICC and ICISG (UICC)
Importance of a CIS for a cancer organization (ICISG)
ICISG what is a CIS, mission and membership (ICISG)
Overview of CIS Tool Box (ICISG)
Chris will prepare a press release and media advisory for July 5
UICC will organize the press conference, media relations and the press kit. Chris, Ana and Anne will discuss the guest list.
A spokesperson from ICISG will be approached by UICC for a video.
8.4 UICC/ICISG Power Point template
Ana provided samples of the proposed UICC/ICISG presentation template. It was agreed that the blue/grey colour would be the background, IS pictures were preferred, the ICISG logo could be on left hand side on the top bar. Ana will finalize the template.
8.5 New CIS seed grant
Ana announced that UICC is planning to establish a seed grant to help any UICC member start a CIS (start up cost and possibly training for 2-3 organizations per year) with the help of ICISG.
UICC has already identified potential sponsors. UICC would like ICISG to help with
- 3-5 day workshop
- 2-3 day visit from a cancer organization to an existing CIS
- essential elements to be covered by the seed grant
The group expressed its appreciation to Ana for UICC’s recognition of the importance of CIS in general and the support of ICISG in particular. Anne and Chris indicated the need for a more in depth discussion with all board members to assess the implications on the on-going relationship between UICC and ICSG as well as the integrity, capacity, and obligations from ICISG tied to a potential sponsorship arrangement.
It was agreed that this topic would be discuss further with UICC and the ICISG board members starting in July.
9.0 Review of CIS program at UICC Congress
It was agreed that each ICISG presentation will be done on the ICISG power point template, with an option to add a cancer organization logo on the bottom right corner.
Anne distributed the CIS program to date from July 7 to July 11 (see attached). Anne will ask Ruth if the CIS 1 session can be rescheduled at 3:30pm to avoid conflicts between two CIS sessions.
Key elements for a successful CIS (English)
Monika, Cora and Ingrid will coordinate with Flora.
Key elements for a successful CIS (French)
Ingrid and Anne will adapt and translate the English version
Physicians and CIS
Catherine will coordinate with Doreen and Mary Anne
Serving your community and NGO
Anne will send the draft power point to David Hill by the end of May
Anne and Chris will discuss the possibility of editing the NCI/CIS video
10.0 Room rental
After reviewing the requirement for room rental, it was agreed that UICC would look after the room rental for the course and that there would not be a need for ICISG headquarters. Other meetings room requirements would be as follows:
| July 7 | Rehearsal and board of directors meeting at NCI or NCCAM |
| July 9 | Reception sponsored and organized by ACS (Mary Anne to confirm) |
| July 11 | date to be confirmed depending on meeting room availability for AGM and board of directors meeting. Anne will inquire about the cost of renting a meeting room and invoice board members (no internet required) |
11.0 Other business
Each board member will send the name and phone number of their hotel in Washington to Irene.
12.0 Next meeting and adjournment
The next conference call will be held on May 24 at 8AM (Toronto time).
On behalf of the group, Anne thanked Monika for hosting the board meeting and for her generous hospitality. The meeting was adjourned at 3PM, followed by a visit of KID.