This article first appeared in Digital Edge, The Edge Malaysia Weekly on June 12, 2023 - June 18, 2023

In 2018, during a visit to deliver Hari Raya goodies to the patients at Hospital Kuala Lumpur’s (HKL) paediatric cancer ward, Jeevan Rajoo and his team at Tata Consultancy Services (TCS) Malaysia Sdn Bhd saw first-hand the challenges that patients and their families faced during and in between cancer treatments.

“We saw the suffering of children and parents, many of whom hailed from the rural areas,” says Jeevan, who is the country head and CEO of the global IT services, consulting and business solutions organisation.

Insight gained from National Cancer Society Malaysia (NCSM) managing director Dr M Murallitharan and chats with doctors revealed that one of the challenges of cancer care in Malaysia is the dearth of information between the patient’s treatment cycles.

“Due to limited beds at hospitals and a waiting list of patients, doctors cannot keep patients in hospital for weeks or a month after the treatment to monitor their symptoms. For example, patients from out of town make the trip to HKL and after receiving chemotherapy, they would go home; returning to the hospital a few months later for the next cycle of chemotherapy. There was no real tracking of the patients’ symptoms and condition between each cycle,” says Jeevan.

Many parents, he points out, didn’t keep a diary on how their children fared at home or the data was very vague. Parents would respond by saying their child was okay, there was some pain or that they didn’t do so well, all of which were very ambiguous and meant the doctor had to guess the patient’s pain levels and symptoms.

“We spoke to doctors to understand why this information was important and how the doctors could use the data to curate the next dose of chemotherapy. We asked doctors about the kind of information that they would require and how detailed it needed to be as well as how frequently they would need it,” Jeevan adds.

In keeping with the Tata Group’s 150-year legacy of giving back to communities, particularly through its cancer care programmes, TCS leveraged its global technology and expertise to bridge existing gaps in the cancer care scene in Malaysia.

“The intention was very clear — to reduce the time it takes to cure a child by providing doctors with real-time information for each patient,” says Jeevan.

Collaborating with NCSM, a non-profit that provides education, care and support services for people affected by cancer, TCS embarked on the development of a digital platform that would help improve the quality of care for childhood cancer patients in Malaysia.

“We were trying to humanise technology and address pain points that were neglected because of capacity and infrastructure limitations, and with NCSM as a partner, we felt we could do more in this space,” he says.

Unveiled in March, the platform, in the form of a mobile app called CANSupport, is a collaboration between TCS and NCSM as well as transport stakeholder Malaysia Aviation Group (MAG).

CANSupport has been designed as a simple and intuitive app for patients and their caregivers to input symptoms, ranging from fatigue to nausea and shortness of breath, as well as pain levels using the Wong-Baker pain scale. It is believed to be the first of its kind in the world for childhood cancer patients.

Doctors also have real-time access to their patients’ reactions to the treatment. “If the drug is too strong, for example, the child might have a very negative reaction which requires intervention. With the app, this data can be captured. For example, if the child has been vomiting for the last five days because of the drugs, then the doctor can immediately alert the parent or caregiver and have the child sent to the nearest hospital,” says Jeevan.

CANSupport, he adds, is a “phenomenal tool” for doctors. Through the doctor dashboard platform, the pain charts of multiple patients can be monitored. The patient data is stored in the cloud, managed by NCSM, the app’s custodian. The data provides doctors with information on the effects on each patient following a round of chemotherapy, allowing doctors to make informed decisions for the subsequent treatment.

“So, when the child comes in for the next chemotherapy cycle, the doctor has a complete spectrum of the side effects from behaviour and pain to other symptoms. This is insight that doctors never had before,” he says.

Available in four languages, CANSupport also provides free psychosocial support services, including clinical and peer counselling, clinical psychology, play-therapy and dietetics.

“There are in-app assessment tools to assess the patient’s mood, anxiety and depression, and a connect button for a video consult with a clinical psychologist, and if the patient is near enough, a face-to-face consult,” says Murallitharan, adding that financial aid and health and nutrition support will also be available on the app.

One of the app’s unique features is that it enables parents to request free flights for their children’s treatment and hospital visits thanks to the collaboration with MAG. Travel support for the patient and the accompanying caregiver is also offered by other transport stakeholders, such as Keretapi Tanah Melayu Bhd (KTMB) and Grab.

Rolled out in phases throughout the year, CANSupport is expected to go live this month — coinciding with the app’s first complimentary flight.

Stressing the importance of travel support for cancer patients, Murallitharan points to the financial burden that comes with a cancer diagnosis. “For the middle- and upper-middle-income groups, cancer is already a burden. But for those in the lower- and lower-middle-income brackets, cancer is almost a death sentence because when a child has cancer, one parent will give up their job to be the caregiver,” he says, adding that it isn’t just the cost of food and treatment that is a burden but also travel costs as there are only a handful of hospitals that treat childhood cancer.

“This means that patients from the east coast of Peninsular Malaysia and Sabah and Sarawak might need to travel to KL for treatment, and with cancer treatments requiring multiple visits, we’re talking about five to six trips a year. So, what happens is that some might skip treatments altogether because they cannot afford these travel costs. The treatment might be free (or subsidised) but then there are all these treatment-related costs that are so financially catastrophic,” he says, estimating that some 1,200 children with cancer require travel support annually.

He adds that accommodation support will eventually be one of the services offered on the app. Requests made via the app will be processed by NCSM who will arrange travel with the respective transport stakeholders or accommodation at halfway homes for cancer patients and their caregivers.

NCSM, which supported over 874,361 Malaysians impacted by cancer in 2022 alone through its Cancer and Health Screening Clinic, Nuclear Medicine Centre, Resource and Wellness Centre, Adults’ Home of Hope and Children’s Home of Hope, expects CANSupport to directly help more than 1,000 childhood cancer patients yearly.

“Before the app, support for cancer patients such as transport or accommodation support as well as counselling and psychosocial services were carried out manually through the NCSM hotline.

“But this had limitations; we’re a non-profit, we have limited staff and at the same time, patients and caregivers also needed to know how to reach us. With CANSupport, TCS has digitalised these services — making them accessible to those who need them across the country. Technology has become a great leveller,” he says.

Murallitharan adds that NCSM is currently onboarding patients who have registered on the app. In this first phase of the app’s roll-out, NCSM is working with the Ministry of Health to ensure that those registered are patients on active treatments.

“We’re also putting up kiosks at the cancer wards in KL, Ipoh, Penang, Terengganu, Johor, Sabah and Sarawak to raise awareness about the app. In the next six months or so, when new patients come in, NCSM volunteers will help parents to download and sign up for the app,” he says, adding that plans are also afoot to develop videos to educate parents on pain scale reporting.

Buoyed by the positive feedback from patients, their caregivers and doctors, TCS and NCSM believe that there is tremendous potential in expanding the app’s offerings. “CANSupport began as a clinical pain app and for patients to report their symptoms. Then, when TCS asked us what the other challenges were, we talked about transport. That’s how we looped Malaysia Airlines in to see if they would participate. Then the Ministry of Transport suggested KTMB, and later an ambulance service also stepped up to offer its services,” says Murallitharan.

Jeevan believes there are opportunities for other service providers to collaborate on the app.

“Transport is the first step, but we hope to evolve the app by bringing in many other parties so the child can get as much benefit as possible. For example, if we can get hotels to provide accommodation from excess capacity, or if we can get internet providers to offer free internet for cancer patients’ families, then we’re creating a very healthy ecosystem for the child’s well-being.”

He believes that if CANSupport succeeds in addressing the gaps in the infrastructure of paediatric cancer care and management, then the app can be expanded to another vulnerable group: the elderly.

Murallitharan also has high expectations for the app. “Within the five-year mark, we want 80% of all cancer patients in Malaysia to be using the app.” He adds that NCSM will be working closely with doctors to add other parameters to the app. “We’re hoping that in the long run, the app can offer clinical researchers insights into how patients respond to chemotherapy.”

Jeevan does not discount the possibility of replicating the app in other countries. “The Tata Group has more than 20 cancer hospitals in India, and NCSM has worked with Tata for a long time in the cancer space, so if we can prove the concept here, this is a case study that Malaysia can offer the world.”

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