The world of cancer information
INTERNATIONAL CANCER INFORMATION SERVICES GROUP
Conference Call
December 9, 2002 - 8:00-9:15 AM (EST)
| Present: | Catherine Dickens (Chair) | Cdickens@macmillan.org.uk |
| Cora Honing | voorlichting@kankerbestrijding.nl | |
| Marion Morra | morram@earthlink.net | |
| Monika Preszly | m.preszly@dkfz.de | |
| Hilke Stamatiadis-Smidt | presse@dkfz.de | |
| Chris Thomsen | thomsenc@mail.nih.gov | |
| Anne Vinkel | avs@cancer.dk | |
| Anne Vézina | avezina@cancer.ca | |
| Regrets: | Doreen Akkerman | Doreen.Akkerman@cancervic.org.au |
| Mary Anne Bright | brightma@mail.nih.gov | |
| Claudia Di Loreto | aimac@tin.it | |
| Richard Epstein | daarje@nccs.com.sg |
MEETING
31. WELCOME AND INTRODUCTION
Catherine welcomed everyone and introduced the agenda for the meeting.
Catherine informed the group that Robert Burton had to reschedule his
trip to the UK and that she will report on his visit at a later date.
32. MINUTES OF JULY 3rd, 2002 MEETING, OSLO
The minutes of the meeting held on July 3rd 2002 in Oslo were adopted
without changes.
33. BUSINESS ARISING
33.1 Listserv
It was noted that the subscription address for the ICISG listserv has
recently changed but that members already subscribed do not have to re-subscribe.
Given that that no messages have been received lately, Catherine will
check that the listserv is still live and will confirm the address.
3.2 Governance
Comments received from directors were included in the latest governance
paper. Anne Vz will post the governance guidelines on the ICISG website.
It was agreed that the governance guidelines would be reviewed and updated
at the beginning of the next presidential term.
3.3 ECL quality standards for web health information
Hilke will distribute the draft German quality criteria for web health
information on the listserv.
Other issues from business arising were discussed under the Workplan Progress Report.
3.4 WORKPLAN PROGRESS REPORT
Refering to the ICISG draft Workplan 2001-2004 distributed prior to the
conference call, Catherine asked each member to report on progress.
3.5 Website development
Anne Vz reported that the proposed website architecture was outlined in
the minutes of the last meeting as per below:
- 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 websites
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)
- Members profile
The list of ICISG members has been updated and posted on the ICISG web. The list has also been sent to Nathalie S. at UICC to verify the contact information of those organizations that have not replied to requests for confirmation. It was agreed that each organization, especially those without an English website, would provide a short descriptive paragraph on their cancer information service and parent organization. Monika and Cora will each send a paragraph on their CIS to Anne Vz. Anne Vz and Irene will work with Jasper in the new year to complete the members profiles and implement the proposed website architecture.
- Profile ECL Helpline members
Monika, Cora and Anne Vk will send the email addresses of ECL Helpline members to Catherine, together with a draft letter of invitation to join a European Network for cancer information and support. Catherine will send the letter of invitation on behalf of ICISG, which will include the ICISG members profile form.
- How to become a members page
Anne Vz will develop and give to Jasper for posting.
- Two ICISG member experiences
Monika will write an article to post on the UICC and ICISG webpage.
- ICISG governance
Monika will send comments to Catherine. Also see 3.2.
- ICISG / CIS assessment tool
Catherine, Marion, Chris and Claudia will develop a draft in 2003.
- Liaise with UICC re ICISG members
Anne Vz sent the updated list of members to Natalie for confirmation of contact information. Anne Vz will follow up with Nathalie.
- How to nominate and vote page
To be developed by Catherine and Anne Vz.
- Board members bio paragraph and photo
Board members who have not already done so will send a bio paragraph and photo to Anne Vz before the end of December 2002.
- Listing of ICISG board member publications
No progress
3.6 Promotion, Communication and Sponsorship
- Logo, promotional brochure
Chris reported that she and Claudia have been working on the initial design and will present proposals in 2003 for comments. The brochure design will follow.
- Research activity on CATs
Chris indicated that a series of focus group interviews with cancer patients have been completed by her organization to identify the use of CATs. Hilke and Monika will send the results of the 1998 CATs survey to Chris.
- Sponsorship for 4th global conference
Doreen and Catherine will develop.
- ICISG article in UICC newsletter/website
Catherine noted that the group picture of the ICISG board of directors and an article on our meeting in Oslo was featured in the UICC newsletter.
It was suggested that Monika draft an article on the use of CATs in Germany for the upcoming UICC newsletter.
4. ICISG Faculty/University
- Establish faculty on website
Catherine and Marion confirmed that the goal is to design basic and advanced CIS course outlines. Marion will send a draft for comments and faculty members will be identified.
- 4th UICC global conference
Catherine did not receive a reply from UICC regarding our request to have Marion M. on the planning committee. Marion and Cora will develop a proposal on how ICISG could contribute to the conference. The location and time of the 4th global UICC conference has not yet been confirmed. The meeting between Catherine and Robert Burton will help clarify these issues.
- The upcoming UICC conference in Bali was discussed briefly. Cora will
contact Doreen for more info.
- Exchange program
Mary Anne and Anne Vz will work on this. No progress to date.
5. Other business
Cora will email information on the EU project about CAM.
6. NEXT MEETING
It was agreed that the location for the next in person meeting would be
London, England (home of our President). The target date will be sometime
in the Fall, members will send preferred times to Anne Vz.
The group was in favour of a 2 day meeting, with enough time to exchange on our respective experience, discuss plans for the next UICC conference and to address other emerging issues. The draft agenda will be the subject of the next conference call. Anne Vz will arrange the next conference call for end of March or beginning of April 2003.
ADJOURNMENT
The conference call was adjourned at 9:15AM (EST)
Prepared by Anne Vézina, December 18, 2002