Background Two breast cancer survivors, one from Malaysia and the other from USA, initiate the idea of adapting and translating selected educational materials into Bahasa Melayu as one of the ways in providing the much needed information on breast cancer treatment and care in Malaysia. Their effort evolved into a major educational activity; Cancer Education & Research Project (CaEd). Leadership for this program is being provided cooperatively by the Universiti Putra Malaysia (UPM) and Cornell University. CaEd was formally launched in Malaysia in September 2003.
Aspiration CaEd aspires to be the frontier leader for cancer education and communication in Malaysia. CaEd spearheads a number of initiatives in providing access to people living with and affected by cancer, with culturally appropriate information and knowledge on the disease treatment and care with the hope of empowering them to gain control or better managers of their own situations, to promote self-care and participation, to have feelings of safety and security, and to achieve a more organized and quality of life.
Highlight Since September 2003, CaEd has been making efforts to pioneer educational and informational needs of breast cancer patients and survivors, their families and friends and the greater community in Malaysia. Many of the initiatives have been successfully developed and implemented into activities and programs, most of which have resulted in materials and activities that are sustainable in nature. The activities and programs, all of which will continue to have major impact on cancer information and knowledge management and utilization in Malaysia, include:
Establishing a wide array of stakeholder support encompassing both governmental and non-government organizations and influential individuals in both Malaysia and the USA. In the recent development, networking with cancer organizations and institutions in Australia has been established.
Producing and disseminating 10 titles of educational materials on breast cancer in Bahasa Malaysia. Work on home grown low-level readership booklets on cancer information is being developed and will be published soon. Work on translating selected titles into Mandarin is in progress. Other effort includes adapting cancer specific information in collaboration with Cancer Council Victoria and Peter MacCallum Cancer Center, Melbourne, Australia.
Forming support and volunteer group (e.g. KanWork) that comprise of cancer survivors and able-bodied volunteers. Spiritual, emotional and social support among members was found as important attribute of KanWork support group.
Establishing Cancer Resource Center at Hospital Putrajaya to provide in-situ information and emotional support for those living with, through and beyond cancer.
Setting up Resource Center for Education and Communication on Cancer (CaRE) at Universiti Putra Malaysia. CaRE will be developed to provide the following facilities: Cancer Knowledge Management Hub; Cancer Resource and Support Services, and Cancer Continuing Education & Lifelong Learning.
Developing cancer portal to provide information on: services for people affected by cancer; publication on cancer specific or types; treatment and management of cancer practical issues; and general information for public on cancer, prevention, early detection, risk factors and screening.
The Contribution The CaEd Project’s participation and contribution have been crucial in fulfilling needs and challenges that exist in the current health delivery infrastructure of the country, particularly with regards to cancer education and communication. For example, in the case of cancer of the breast, there is an increase in mortality rate from this treatable disease. The lack of opportunities for patients and others affected by breast cancer to gain access to appropriate knowledge and to strong support system are among the contributing factors. CaEd becomes the first organization in Malaysia that focuses its activities towards providing the said access, and development of functional home-grown support system, and cancer knowledge management facility.
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