Old CIS, New Purpose

Retooling the Cancer Information Service for Tracking Patients Journeys in Malaysia

In Malaysia, as in many other Asian countries, a critical challenge confronting healthcare professionals treating cancer patients is the drop-out of patients along their treatment journey. Qualitative data estimates that close to a third of patients being treated in the public sector drop-out from being diagnosed, starting or completing their treatment. Information derived from patients via focus groups point to certain key factors being involved in why patients drop-out: including i) financial or logistic issues with getting treatment; ii) lack of trust in mainstream therapeutic regimens aka preferring traditional or alternative medicine; iii) fear of treatment and iii) a lack of information of the treatment procedures and processes.

From the above, it is clear that 3 out of the 4 key factors are centered around patients’ fears, and a lack of information pertaining to their future treatment journeys and outcomes.

The Cancer Information Service (CIS), in various shapes and sizes across the globe, has been set up exactly to fill these gaps in our respective countries. Ours is no different. National Cancer Society of Malaysia (NCSM) set up our Cancer Information Service (CIS) in April 2016 and is a service run by full-time, trained nursing personnel who field and answer queries on all aspects of the cancer treatment journey; with the ability to provide bridging to other required services, either in-house at NCSM where available; or externally to other organisations. This has largely been a passive service: where we sit and wait for the patients to reach out to us.

In an effort to increase its functional capabilities and work actively at tackling one of the clear challenges within the Malaysian cancer control landscape, we retooled the CIS to take on an additional task: active patient journey tracking.

Through its other divisions, NCSM is already actively engaged in screening and diagnostic programmes for the community and the underprivileged in terms of colorectal cancer, breast cancer and cervical cancer namely as the three top ‘screenable’ cancers. Patients who are found to be positive from a screening programme are subsequently referred to the physician of their choice for further testing i.e. a diagnostic test; and unfortunately, this is the first point on which many people fall-out of their journey by either delaying or just not turning up for a diagnostic appointment.

Through the active patient journey tracking, a list of the patients who have been found to be positive from a screening test are then referred to the CIS personnel who then call to follow-up the patient. Prior consent to share this data, is of course, obtained beforehand during the screening test itself. CIS personnel, who are trained oncology nurses with counselling skillsets, call within a fortnight of the patient having received the results to check whether they already have either: i) gone for a diagnostic test, ii) made an appointment for a diagnostic test; or iii) having queries/difficulties with going for a diagnostic test. The patient’s queries, if any, are addressed and logistic issues are attempted to be resolved by the CIS personnel as well (this already being a task they undertake for patients calling in to the CIS) such as calling to arrange an appointment date for the patient. Patients who were found to be positive from a diagnostic test and have cancer are similarly followed up via phone every fortnight by the CIS throughout the cancer journey.  Patients are, of course, welcome to call and make their own queries at any time to the CIS but this active, scheduled calls from the CIS is aimed towards achieving the following:

i)             Offer an additional, valid source of healthcare information provision from qualified personnel who is dealing with the patient and sometimes have no time to deal with all their concerns.

ii)            Offer a qualified alternative person to answer and resolve their fears, worries and issues pertaining to cancer besides their clinical care team.

iii)           Keep patients from dropping out of scheduled appointments and/or treatment as they continue to get reminder phone calls and gentle ‘nudges’ to keep them on the treatment pathway.

Through the active patient journey tracking project, NCSM intends to enhance the role of the CIS from a passive call-recipient service awaiting calls from prospective clients to one in which they are actively playing a role in aiding potential patients navigate their cancer journey successfully. 

The active patient journey tracking project is being piloted out of NCSM’s CIS with promising early results. More comprehensive results will be reported in the near future.

Contact details for further questions: muralli@cancer.org.my