The world of cancer information
INTERNATIONAL CANCER INFORMATION SERVICE GROUP (ICISG)
BOARD OF DIRECTORs
Canadian Cancer Society, Toronto, Ontario, Canada
Minutes of meeting
July 18-19, 2005, 9:00AM-5:00PM
Present:
Ingrid Aubry iaubry@institut-national-du-cancer.com
Doreen Akkerman Doreen.Akkerman@cancervic.org.au
Catherine Dickens Dickenscatherine@yahoo.com
Cora Honing choning@kwfkankerbestrijding.nl
Marion Morra morram@earthlink.net
Monika Preszly m.preszly@dkfz.de
Chris Thomsen (VP) thomsenc@mail.nih.gov
Anne Vézina (President chair) avezina@cancer.ca
Irene Miller imiller@cancer.ca
Guest:
Ana Olivera, UICC olivera@uicc.org
Regrets:
Mary Anne Bright brightma@mail.nih.gov
Philippe Mourouga pmourouga@institut-national-du-cancer.com
Enclosures – distributed at meeting:
Minutes of conference call May 18, 2004
Outline – Tool Box for starting a cancer information service
Proposed CIS needs assessment survey for UICC members
Draft – CIS development 4-day program grant
APCASOT scholarship program
MEETING – July 18th, 2005
Opening remarks
Anne welcomed Board members to Toronto and introduced Ana Olivera from the International Union Against Cancer (UICC).
2.0 Review of the agenda, approval of minutes
Anne reviewed the two-day agenda and indicated that the Board members were invited to visit the Cancer Information Service call centre in Hamilton on July 20th.
The minutes of the last conference call held on May 18th 2005, were approved as moved by Chris and seconded by Doreen
- Irene will send May 18 minutes to the ICISG list-serv and post on the ICISG website.
- Round table
Board members gave a brief update on activities in their organizations.
Catherine Dickens - England
Catherine is setting up a consultancy service. She updated the Board on the restructuring at MacMillan Cancer Relief, England; MacMillan produced a CD to describe services in the UK; Cancer Research UK telephone information service has nurse specialists answering calls on prevention, promotion and patient information.
- Catherine will send the address for ordering the How to Start a CIS (CD-ROM)
- Ana will send a copy of the European Cancer Ligue Patients Rights information.
Doreen Akkerman - Australia
Hired a medical oncologist; produced new sexuality brochures; started two research projects –
- physicians referral service
- pathfinder training (to guide people through the health system).
Gave Living Well seminars for support for those who are dying; have a program for training doctors and psychologists in communication with patients; are part of a clinical practice guidelines working group.
Marion Morra on behalf of Mary Anne Bright - USA
Monograph (13-14 articles) being published in November 2005 in the Journal of Health Promotion on CIS research and preventative medicine; NCI/NCI have new 5-year contract cycle; restructured number of call centres from 14 to 4; new partnerships for community outreach programs to underserved population, using instant messaging, providing smoking cessation support, and published new CAM brochure. NCI will have its 30th anniversary meeting in March 2005 in Washington. Marion has been appointed Vice-Chair of ACS.
Chris Thomsen - USA
NCI/AIMac (Italy) have signed a MOU to do a series of workshops on communicating with cancer patients. On December 16, 2005, there will be a workshop on Cancer and CAM held in Rome.
Ingrid Aubry - France
The National Institute of Cancer was established. This organization has five departments – statistics, cancer care, prevention, communications and source information desks in public centres (based on the cancer plan in France).
Cora Honing - Netherlands
Preparing a list of selected websites and developing information to fill gaps in cancer information for a web portal; the government along with other NGO is working on a plan to develop national guidelines for prevention, patient support and cancer information dissemination.
Monika Preszly – Germany
New leadership at the cancer centre with a focus on translational research; staff grown to 50; KID email service staff has been increased; a new pain and fatigue hotline is in operation; a national mammography screening program has been launched. There will be a cancer information book published in the fall 2005. Completed user survey that identified issues of phone line accessibility.
European Cancer League (ECL)
Cora also updated the group on the ECL. The secretariat is in Brussels. There are two lobbyists for cancer control and patients rights. A new website is set up to foster exchanges in addition to the newsletter. A working group focuses on tobacco control and another on developing a pamphlet on patient rights. ECL is developing a policy re collaboration on pharmaceutical companies. The next general meeting of the ECL will be held in Prague in the fall 2005.
- Cora will send the ECL newsletter to ICISG board members
Anne Vézina - Canada
The CCS cancer information service will be 10 years old in October 2006; the number of calls to the CIS is approximately 65,000 per year even through there had been a shift from telephone to web inquiries; CIS Vancouver call centre is moving from volunteer to paid Information Specialists starting July, 2005.
CIS is now using an interpreter service for inquiries in languages other than English and French. Starting to explore physician referrals.
- Governance, Membership and ICISG website
- It was agreed members of ICISG will submit quick news and articles of interest to the list-serv.
- Ana and Ingrid will compare the UICC members against the ICISG membership list and will put together a complete list for the group.
- Chris will revise the CIS membership questionnaire. The questionnaire will be sent via list-serv and email.
- Irene will compile membership questionnaire results
- Doreen/Catherine will ask Eva (Serbia) and Flora (Singapore) for a members’ case study to be added to the ICISG website.
- Anne will also check with South Korea about the possibility of an article on the start up of their CIS centre.
- Irene will follow-up on website suggestions.
- Ingrid will submit an application on behalf of the National Cancer Institute, France
- Cora will follow-up with the Belgium and Flemish Ligues about membership in the ICISG.
- Cora agreed be the contact person for the Norwegian Cancer Society.
- Irene will check with the Ulster Cancer Society regarding their potential membership.
- Catherine will follow-up with MacMillan Cancer Relief regarding a contact from their organization.
- Catherine will follow-up with the Irish Cancer Society regarding board nomination
- Chris will explore a new address for the list-serv
- Irene will contact the Ligue nationale du cancer for new contact name
- Anne and Chris will develop a strategic plan for ICISG that would include such items as:vision, future direction, sustainability, succession, ICISG fellowship, scientific advisory group, consultancy of board members, faculty course and publications.
5.0 UICC collaboration
- Ana presented the preliminary results of the CIS survey sent to UICC members. Preliminary information will be sent out after Sept. 15th. Ana will forward the full report to ICISG board when completed. ICISG will follow-up with UICC members who don’t have a CIS.
- Anne, Chris and Mary Anne will write an article on Needs Assessment Report for the UICC e-letter.
- Anne/Chris/Marion will submit an article on the How to start a CIS course for the UICC newsletter
- Anne will submit request to Ruth Rodgers for meeting room, food, AV equipment for the ICISG course prior to the UICC conference in Washington, July 2006. Will also require meeting room for the ICISG AGM and Board meetings being held in Washington.
- Ana wanted to know what ICISG required in funding to bring ICISG members to both the ICISG course and the UICC conference. It was noted that funds could be available through ICRETT.
- Catherine will look into using ICRETT and reverse ICRETT as a funding mechanism for ICISG members to attend these events. It was also agreed to look at the long-term possibility of having an ICISG scholarship to allow ICISG to run courses, have the ability to visit other countries.
6 How to manual (Tool Box)
Marion took everyone through the proposed ‘Tool Box’ and requested additional resources from the Board members. They will be forwarded to Marion as soon as possible.
An outline of the tool box will be available from the ICISG website; its content will be maintained on the NCI/CIS computers.
- Anne and Marion will send the timetable for the toolbox to Ana
7 Sharing best practices
Doreen shared her experiences in running the APCASOT scholarship program in Victoria, Australia in May 2005. The course required two facilitators and the participants have a working knowledge of English. The course covered political issues, government support, quitting smoking/chewing tobacco and cultural attitudes, cancer statistics and communications. Handouts were sent by email.
For the ICISG course:
- Anne will talk to Ruth Rogers about pre-registration for the course and AGM in program.
- Pre-registration questions will be prepared as well as work book
- Participants will be required to bring cancer statistics as well as list of primary cancers from their country.
- Irene will post preliminary program on ICISG.org
8.0 UICC Conference
Anne gave an overview of the ICISG part of the UICC program. The group made suggestions to develop the outline of the pre conference course, plenary and workshop sessions (see attached preliminary program).
- Each group of presenters will develop an extended summary for review at the next conference call.
- Anne will ensure that ICISG board members have their affiliation to ICISG mentioned in the program
9.0 Other business
- Irene will post a list of brochures in other languages available from member organizations on ICISG website
10.0 Next meeting and adjournment
Future conference and meetings – dates to be confirmed:
Conference call November 2, 2005
Conference call January 2006
In person meeting March/April 2006 – Heidelberg (proposed)
In person meeting July 2006 – Washington
The meeting was adjourned at 5 PM.
DRAFT UICC/ICISG PROGRAM 2006– Revised JULY, 2005
OVERVIEW
Conference: UICC World Cancer Congress 2006
Theme: Bridging The Gap: Transforming Knowledge Into Action
Location: Washington, DC
Date: July 9-11, 2006
Attendance: 5,000- 6,000 participants
There are 5 tracks/themes:
- Cancer research, diagnosis and treatment
- Public health, prevention and education
- Patient support
- Building capacity (includes ICISG)
- Tobacco control
Program structure for each day:
8:30 General plenary (developed by UICC Program Steering Committee)
9:45 Break
10:15 Track plenary
12:00 Lunch, exhibit, networking
1:30 Concurrent sessions (symposia, panels)
3:00 Break
3:30 Concurrent sessions (workshops, free paper, master class)
5:00 Adjourn
Invited sessions – to be confirmed June 15, 2005
Each track is responsible for 6 plenaries (2 per day) and 30 concurrent sessions.
Call for abstracts – Fall 2005
Additional CIS workshops will be based on submitted abstracts reviewed by ICISG.
ICISG board members:
*****Please review proposed program and session where your name has been suggested****
Saturday July 8 : PRE-CONFERENCE COURSE (all day)
How to Start a Cancer Information Service (CIS)
For individuals interested in starting a Cancer Information Service to learn general information, tips and tools for starting a CIS.
Facilitators: Marion Morra, Mary Anne Bright
Presentations by ICISG members, ACS (Terry Music) and UICC (Ana)
A Cancer Information Service (CIS) provides accurate and up-to-date cancer information to cancer patients, their family and their friends, healthcare professionals and the general public. It is defined by a one-on-one interaction between a client and a trained information specialist. This ensures a high-quality personalized interaction by telephone, email, instant messaging or in-person visits.
With the expertise of over 40 members from 28 countries, the International Cancer Information Service Group (ICISG) provides assistance to cancer organizations interested in the planning, implementing or expanding their information service.
ICISG will hold a pre-conference course for 25 participants interested in starting a cancer information service (CIS). Topics to be covered include basic needs assessment, scope of services, strategic plan, staffing and financing a CIS. Participants will have the opportunity to have individual consultations with CIS experts and get planning tools and resources.
Audience
This is a beginning course, designed for 25 participants from countries or organizations who are
- interested in starting cancer information service
- in the midst of planning their new services
The program will be based on the How To web-based manual developed by the International Cancer Information Service Group (ICISG) in collaboration with UICC.
Pre-registration of participants with Irene and refer them to the web needs assessment
Ask participants to prepare with 3 questions
Room set-up and preparation
Develop ICISG/UICC workbook for the meeting (include power point presentations)
Pens
Round tables with table number
Name tags with colour dots for ICISG and participants
Flip charts
Groupings – mix of experience, group by geography
How to Start a Cancer Information Service (CIS)
9:00-9:15 Welcome and overview of ICISG and collaboration with UICC
9:15-9:45 Introduction
Participants will present where they are, what they need and expectations
9:45-10:30 Objectives of the day
What is a CIS, service delivery
Operating principles
Overview and demo of web-based tool
10:30-10:45 Health break
10:45-12:15 Determining the scope of services
Different types of services
Operating hours
Process of a call and example (recorded)
Presentation and examples
Discussion by tables with workbook
12:15- 1:00 Lunch
1:00 – 2:00Staffing – competencies, skills
Overview, importance of human touch, one-on-one personalized service
Education, skills, core competencies, capacity/minimum commitment depending on operating hours
Different models (volunteer, staff, contract, part time, full time)
Discussion by tables with workbook
2:00-3:00 Training plan, monitoring and support
Key topics and sample training plan
Monitoring inquiries (who, what, when, where, how)
Supporting the information specialists
Discussion at tables with workbook
3:00-3:15 Health break
3:15- 4:15 Resources and technology
Key points
Sources of cancer information (credible website, languages, cultural diversity)
Developing your own (print, electronic, evidence-based, expert review)
Services in the community (topics, inclusion/exclusion criteria)
Keeping track of inquiries and recording statistics
4:15-4:45 Meet the experts
Scope of service
Staffing
Training
Resources and technology
Other topics (promotion, CIS within your organization, advisory committee…)
4:45 – 5:00 Evaluation and wrap-up
Conference workshops on CIS
ICISG consultation (exhibit space, head quarter office)
ICISG general meeting
Outcomes
- gain a good understanding and knowledge of steps needed when beginning information services
- receive handouts and examples of tools needed for service and where they can be obtained
- be informed on how to access the Web-based How To Manual
Sunday July 9: Cancer planning and strategies
Key Elements for a successful Cancer Information Service (CIS) (90 minutes)
Moderators: Marion Morra
Chris Thomsen
Presenters: Monika Preszly
Cora Honing
Flora Yong
2 Hand held microphones
Handouts of power point presentation
Questions at the end…
Computer and projector
Ask participants to leave their card
Objective:
To present a framework and key elements of a successful CIS based on world-wide experience
- Overview (10 minutes) Chris and Marion
- Presentation of speakers
- What is a CIS, service delivery, scope and operating principles
- Objectives of the workshop
- Successful” elements:
- Provision of evidence-based cancer information
- Reaching your audience
- Meet the needs of clients
- High satisfaction level based on user survey
- Key elements (45 minutes) – key points, lessons learned and examples
- Staffing and training - Cora
- Reliable information resources and databases – Ingrid/Monika
- On-going quality assurance, collecting inquiry data - Monika
- Collaborations and promotion - Cora
- Case study – Flora (10 minutes)
4. Questions and discussion (20 minutes)
5. ICISG and web-based tool (5 minutes)
FRENCH
Key Elements for a successful Cancer Information Service (CIS) (90 minutes)
Elements clés pour un service d’information sur le cancer performant
Moderators: Anne Vézina
Presenters: Ingrid Aubry
Philippe Mourouga
Robert Desmarais
Hand held microphone
Handouts of power point presentation
Questions at the end…
Objective:
To present a framework and key elements of a successful CIS based on world-wide experience
- Overview (10 minutes) Anne
- Presentation of speakers
- What is a CIS, service delivery, scope and operating principles
- Objectives of the workshop
- Successful” elements:
- Provision of evidence-based cancer information
- Reaching your audience
- Meet the needs of clients
- High satisfaction level based on user survey
- Key elements (60 minutes) – key points, lessons learned and examples
- Staffing and training - Robert
- On-going quality assurance - Robert
- Reliable information resources and databases – Ingrid
- Collecting inquiry data – Philippe/Ingrid
- Collaborations – Anne
- Promotion – Belgian Ligue ???
4. Questions and discussion (20 minutes)
5. ICISG and web-based tool (5 minutes)
Monday July 10: Mobilizing communities -
Morning Plenary (45 minutes)
Cancer information services – Serving the community and your NGO (30 minutes)
David Hill – Cancer Council, Victoria, Australia;
Anne Vézina, Canadian Cancer Society
Audience: Leaders of cancer organizations
Objectives:
- Awareness of the importance of a CIS for a cancer organization and the community
- Using CIS to delivery mission and expand NGO capacity and reach
- Understanding of the benefits of a one-on-one interaction, proactive messaging
- Awareness of ICISG to help start a CIS
Key points
David Hill (the issue, the evidence, the solution)
- Increase of incidence and prevalence of cancer worldwide
- Scientific evidence of the cancer information need and the benefits of credible cancer information at time of diagnosis to reduce the burden of cancer
- Role of cancer organization in meeting patient needs given trends toward self-care
- Access to credible and relevant cancer information (overwhelming)
- What is a CIS, scope and principles of operations
- Importance of CIS programs as face of the organization, why it is important to NGO’s to mission and sphere of influence
- What the future holds (more CIS, physicians’ referrals to CIS)
Testimonials and video
Anne Vézina (how to get there, building your capacity)
- CIS from around the world (map of the CIS world in the last 30 years)
- Consolidated world-wide (overview who and what, how many)
- CIS making a difference – cancer information and user satisfaction
- Opportunities and challenges (resources)
- ICISG to help you start a CIS
Tuesday July 11: Organizational development
2 Hand held microphones
Handouts of power point presentation
Questions at the end…
Computer and projector
Ask participants to leave their card
How physicians and CIS can work together to serve cancer patients
Target audience: Clinicians/physicians, oncology nurses and other healthcare professionals, organizations with CIS
Moderators: Doreen Akkerman
Catherine Dickens
Presenters Dr. Michael Jefford
Mary Anne Bright
NCI researcher
Antonia Dawson
Catherine Dickens
Objective: Presenting examples of how CIS and the medical community work together to meeting the needs of cancer patients
1. Overview (10 minutes)
- Presentation of speakers
- What is a CIS, service delivery, scope and operating principles
- Objectives of the workshop
2. (55 minutes) – key points, lessons learned and examples
- Learn how to set up a clinician network and encourage referrals to CIS (Michael J.)
- Importance of research projects in partnership with clinicians (Mary Anne B)
- Recruitment for intervention studies (prevention and screening)
- Raising awareness of clinical trials
- Learn about new ways to take CIS into the community through partnership (Catherine D./Antonia Dawson)
3. Questions and discussion (20 minutes)
4. ICISG and web-based tool (5 minutes)
ICISG – Possible topics for additional abstracts for UICC 2006
To be posted on the listserv as suggestion
Members can express interest to be co-presenters
Submit ideas on listserv
Presenters to identify themselves as ICISG members on presentations
Members to ask for logo or ICISG template
- Use of medical oncologist as part of a CIS (Michael J and Doreen) – track 1
- CIS information specialists training plan – the Canadian experience (Donna/Jan)
- Integration of dissemination channels (Monika)
- The role of CIS as a guide/interpreter of cancer information overload (Monika)
- Communications training for healthcare professional (Monika, Doreen)
- Cancer information decision aids on the internet (Cora)
- Cancer information watch and validation (Ingrid, Philippe)
- Evaluation of mammography/breast screening hotline (Monika)
- CIS and prevention campaigns/health promotion (Cora)
- Cancer and CAM (Chris)
- CIS and research (Al Marcus, Mary Anne Bright)
- Credible cancer information on the internet (KID)
- How to put together a website for cancer information (KID)
- Importance of sexuality training for oncology nurses
- Smoking helplines (Mary Anne Bright)
- ICISG – role, members and impact (Catherine Dickens)
- CIS as a catalyst to improve supportive care and services (Doreen)
- CIS promotion – challenges and examples
- Strategies to reach underserved communities (Cora)
- CIS and multi-lingual audiences (Sandra/Canada)
- CIS and pain/fatigue (Monika)
ICISG promotion
ICISG/UICC workbook for the pre-conference course
- ICISG power point template
Exhibit panels
Poster or pamphlet re ICISG
Stickers
- Pins
ICISG/UICC poster or pamphlet on the web based tool kit
CD of web-based tool kit.