The world of cancer information
International Cancer Information Service Group
Business Meeting
27 June 2001
The International Cancer Information Service Group met at the Third Global
Conference for Cancer Organizations in Brighton, England on 27 June 2001.
There were 23 participants at the business meeting. The meeting was called
to order by Doreen Akkerman, outgoing president.
Purpose
The purpose of the ICIS Group is to help cancer information service programs
throughout the world that are dedicated to delivering cancer information
by sharing our experience, tools, expertise and ideas.
Governance
At the business meeting, the following new officers were elected:
President:
Catherine Dickens
Vice President:
Anne Vezina
Consultative Committee:
Doreen Akkerman
Francesco De Lorenzo
Richard Epstein
Cora Honing
Marion Morra
Monika Preszly
Hilke Stamatiadis-Smidt
Chris Thomsen
Anne Vinkel
Governance of the ICIS Group is evolving as our organization establishes itself. The members agreed to separate the Governance document from the Minimum Standards. The Consultative Committee will work on and discuss the Governance further.
Minimum Standards
In establishing minimum standards for cancer information services, the
ICIS Group's goal is to be inclusive of the variety of programs throughout
the world while putting forward what we believe are the core elements
for a quality information program. ICIS Group members are committed to
helping
others as they develop their programs.
By adopting the Minimum Standards, programs are committing to acceptance of the major guidelines as set forward in the Minimum Standards document:
Guideline 1 - Philosophy of the CIS
Guideline 2 - Mission statement
Guideline 3 - Core principles
- Core Principle 1 - CIS organisations are sensitive to, and respect the unique needs, values, and culture of the service user
- Core Principle 2 - CIS organisations respect the rights of persons to make informed choices in relation to their care
- Core Principle 3 - CIS organisations promote and uphold the provision of quality service for all people
- Core Principle 4 - CIS organisations provide a confidential and anonymous service
- Core Principle 5 - CIS organisations respect and support the patient/doctor/health professional relationship
Guideline 4 - Service rationale
Guideline 5 - Service delivery
Guideline 6 - Staffing issues
- Guideline 6.1: Recruitment and selection
- Guideline 6.2: Training
- Guideline 6.3: Supervision
- Guideline 6.4: Performance review
Guideline 7 - Quality assurance and evaluation
Role of ICIS with UICC
The members discussed how best to position the ICIS Group with respect
to the UICC. What can we do? How do we prepare for and have a more prominent
role in the Fourth Global Conference? Catherine Dickens and Anne Vézina
will seek to have ICIS represented on the planning committee for the next
conference.
However, much can be done in the time period between conferences. Members suggested developing a profile of each program to be posted on the website. In addition, we agreed to set up an email listserv to communicate with each other. The CIS of the United States will host the listserv.
Discussion
A general discussion session was held with the following topics discussed:
- P. Ray reminded members that email is more accessible than the Internet in developing countries. He suggested having a session at the next conference on the challenges of setting up a program in developing countries. He suggested that the ICIS Group present at the Asia-Pacific
- Cancer Congress on cancer information needs for that part of the world.
- C. Leuenberger asked for clarification about the ICIS Group: how to join, cost, and time commitment. C. Dickens clarified that all CIS programs may join, there is no cost, and time commitment should be decided by the member according to what they can contribute.
- C. Dickens will talk with UICC about the possibility of travel grants or fellowships to allow staff visits or exchanges among programs and to permit more staff from programs with limited resources to attend the next conference.
- D. Akkerman raised the issue of how we can influence the UICC to keep support to patients on the agenda for the next conference. It was suggested that we use our influence to advocate for a patient to be a speaker at the next conference.
- R. Desmarais commended Doreen Akkerman for her initiative, hard work, and commitment in getting the ICIS Group founded. There was unanimous consent by participants.