Future of cancer care: Exploring evidence-based learnings from North East India

The World Health Organization has declared that, “harnessing new technologies to prevent, diagnose and treat diseases is an important challenge for the next decade”, while the World Economic Forum said it aims “to ensure that the estimated 2050 global population of 9.7 billion have equal rights to access the highest standards of care, and to guide the industry in their effort to transform healthcare delivery systems”.

Cancer is the second leading cause of death globally, accounting for an estimated 9.6 million deaths, or one in six deaths in 2018. Globally, the cancer burden is expected to increase by approximately 60% over the next two decades, putting further strain on health systems, people and communities.

In India, cancer is one of the largest contributors to the burden of disease in the country (over 5%) and contributes significantly to the huge out-of-pocket expenditure (over 62%) observed. India’s cancer burden has risen alarmingly (by about 28%) over the last two decades, but for a majority of Indians cancer care is inaccessible, unaffordable and often detected too late.

However, a new, innovative project in the north-eastern region of India, which is widely regarded as the cancer capital, is showing promise, leveraging technologies to transform cancer care.

The programme, conceptualized as “First Cancer Care” and branded and promoted as the “Megh CAN Care” for awareness and acceptance promotion, is the first of its kind in India that aims to transform the detection and transform the continuum of care and adherence to clinical treatment using emerging technologies via the public-private cooperation model.

The first phase is to run a pilot in the East Khasi Hills, Meghalaya’s most populous and cancer-afflicted district. The programme will form the base and learnings for a national cancer care intervention at the grassroots level for prevention, and control for the development of a national programme for the nation.

The five most prevalent cancers in the state of Meghalaya, as detected in a study conducted by the Indian Council of Medical Research, are oral, breast, cervical, lung and esophageal and are being targeted through three major interventions:

1. Awareness building, mass screening and early detection;

2. Capacity building of health personnel (doctors, nurses and field workers);

3. Developing a standards-based Oncology Data Model.

How did we get here? What are the promising possibilities that can impact the future of cancer management?

After a detailed landscape review of cancer care and related technologies the world over, more than 25 stakeholders from academia, industry, government, clinics, civil society organizations and start-ups put forward their analysis and recommendations in a whitepaper, FIRST Cancer Care: Leveraging Fourth Industrial Revolution technologies for cancer care.

On World Cancer Day 2022, a National Roundtable was chaired by the joint secretary of India’s Ministry of Health, inviting states to adopt the recommendations to transform their cancer care programmes with emerging technologies. Meghalaya was among the first states to proactively put their name forward to begin this vital programme.

The East Khasi Hills in Meghalaya has the second highest incidence of cancer (all cancers included) in India. Meghalaya also has the highest rate of tobacco-related cancers with 70.4% of males and 46.5% of females of all cancer patients having used tobacco in some form or the other.

However, mere technology deployment is often not enough to address the underlying structural and cultural challenges that have impacted growing cancer concerns. For instance, citizens in this district have a deeply ingrained cultural practice of chewing tobacco. Reports also suggest that even educated citizens conceal this habit and choose to swallow the chewed tobacco, significantly increasing their cancer risk. It has emerged that across social strata, the stigma surrounding cancer has kept sufferers from diagnoses and early treatment, and was identified as a key contributor to the region's high cancer incidence.

To stem this, the Government of Meghalaya’s National Health Mission signed a Memorandum of Understanding with the Apollo Telemedicine Networking Foundation (ATNF) and appointed it as the project implementation partner. ATNF is a division of the Apollo Hospitals Group, which designs, develops and catalyzes sustainable technology-enabled community healthcare programmes to address the existing challenges in the public health system.

By May 2023, the government of Meghalaya and Apollo had proactively designed, honed, tested and kicked-off the Megh Can Care campaign. The objectives included:

1. Increase the early detection rate for breast, lung, cervical, oral and oesophageal cancers through awareness building and mass screening;

2. To make the pilot district 100% cancer aware through traditional media and also through innovative social media campaigns;

3. To upskill healthcare personnel in the early diagnosis, enabling access for at-risk groups for confirmation tests and treatment of cancer;

4. To increase survival rates through continuum of cancer care through to palliation and rehabilitation;

5. To ensure digital registry and health records for cancer care (Oncology Data Model).

As a part of this, a three-phase implementation plan spread over 18 months was developed.

Several insights have been gained while addressing ground challenges during phase 1.

In remote areas that are severely lacking in electricity, cellular networks become inaccessible. The data collection methodology addresses the problem with offline solutions. A questionnaire is administered through an online-and-offline based handheld device. Additionally, physical examinations are conducted for all five cancers and device-based examinations are done using contact thermography (Braster Pro) for breast cancer and colposcopy (EVA VisualCheckAI) for cervical cancer, both of which use predictive AI and smart connectivity to generate instant reports.

An elderly lady who was being screened was apprehensive to talk about cancer. Ignorance is perceived as bliss, and screening is seen as something that hampers peace of mind. To address this, a strategy has been devised to engage with the elderly population through faith-based institutions like churches, as Meghalaya is a largely Christian state and the church is a powerful institution to instil belief systems there. Collaborations are being forged with headmen and church leaders who have experienced cases of cancer-related fatalities within their families. The plan involves organizing meetings following church services to disseminate information and encourage participation in cancer screenings.

– Male individuals are often unavailable at their residences because they are away for work. Partnering with local influencers, including radio jockeys and musicians, has proven effective in dismantling the stigma surrounding cancer and facilitating open conversations on the subject, especially in a state that is largely connected to social media.

– There is a reluctance to independently seek screening or pursue treatment. To combat this, a vehicle is provided to transport high-risk individuals for treatment. Additionally, a toll-free helpline number dedicated to cancer (part of the state’s health helpline 14410) has been publicized to address any concerns, counsel patients and set up screenings.

– ANMs and ASHA workers are overwhelmed with campaigns (NCD screening, polio screening etc). Cancer was a lesser priority until this programme was initiated. Since inception, the programme team has independently screened as of December 5, 2023, around 32,288 beneficiaries. To ensure sustainability, beyond the intervention period, comprehensive hands-on, expert-led, technology-blended training is underway for all paramedics, with a particular emphasis on MLHPs (Mid-Level Health Providers). They have completed training modules covering all five types of cancer and have actively begun participating in cancer screenings every Tuesday.

– Premium educational content, designed for the upskilling of doctors, is provided through Apollo-Medvarsity, a reputed medical EdTech provider. In addition, structured physical training sessions have been conducted, focusing on spotting cancer, AI-based devices and advances in cancer diagnostics.

The journey has been highly rewarding, thanks to the impact that can be seen via several project success stories.

Success Story 1 – Squamous Cell Carcinoma: On May 18, 2023, the team was conducting a home-based screening in the Sohiong block, when they encountered a 52-year-old male who was flagged as being at ‘moderate risk’ for cancer on the health risk assessment questionnaire and a physical examination. He had a prominent swelling on his neck and had quite a bit of difficulty in swallowing solids and liquids for over three months at that point.

After a significant amount of counselling, the patient, accompanied by a relative, visited the Civil Hospital, Shillong, where he was diagnosed with a rare condition called a Aortoesophageal Fistula (AEF), which was concealing a more perilous diagnosis of Squamous Cell Carcinoma, which is a common form of skin cancer. Luckily for him, it was detected early enough. He is undergoing chemotherapy and the medical team remains confident that he will triumph over the disease in the near future.

Success Story 2 – Retinoblastoma: The mother of 4-year-old Kyle* (name changed to protect privacy) knew there was something terribly wrong with her son’s eyes – beginning with blurred vision and finally leading to an alarming-looking condition where the entire left eye was left protruding outside the socket. With little specialized help available in and around their home in the Ri-Bhoi district in Meghalaya, she got wind that the state had initiated a cancer-focused programme which also had a dedicated helpline and reached out for help. This was in late September 2023.

Immediately after, the team organized a multi-stakeholder approach to get the child the help he so desperately needed. Between the Head of Oncology at Meghalaya’s apex government-run medical centre, the Civil Hospital in Shillong and an expert ophthalmologist from Apollo Hospitals in faraway Chennai, the child was diagnosed as having retinoblastomas (cancers that affect the retina and most often lead to a complete loss of vision) in both eyes. While the left eye was deemed to be beyond the point of being saved, the race was on to treat the tumour in the other eye and salvage the child’s vision – and, in that way, reasonably sustain his quality of life.

By late October, the child had been admitted, had undergone his first round of chemotherapy and was being monitored by some of the best oncologists available in the state. They remain optimistic that, with sustained treatment, hope is still in sight – courtesy of the quick escalation provided by this programme.

Scaling this programme across the state and stabilizing it until it creates a sustainable system where cancer risk is systematically and periodically screened for are vital – both for the state as well as for the people of Meghalaya.

Successful programmes in Meghalaya involve community engagement, collaborating with local leaders and healthcare professionals, and fostering awareness about healthcare practices. Government and private partnerships play a key role in implementing effective policies, ensuring efficient resource utilization. Tailored programmes addressing local challenges and continuous monitoring contribute to sustained improvements in mortality rates, fostering the health and prosperity of the population.

With governmental commitment to not just detecting cancers at source, but to also building a sustainable system where there is a significant amount of awareness about cancer, reduced lacunae towards screening and a belief that cancer is not a terminal death sentence, there is a long-term vision in place.

An important part of this programme is that technology is leveraged to follow and track patients from the time that they are diagnosed with some form of cancer risk to every step in their treatment pathway and beyond – be it palliative, curative or terminal in nature.

Every step, record and comment is digitally recorded on a single platform, which aims to be a one-stop application for cancer patients across the state, and for those who have been screened and declared as safe. The implications of this are more data-driven accountability and better patient tracking, which will translate into a lowered cancer risk.

All of these will significantly add to the robustness and accuracy of the standards that are developed for the Oncology Data Model (ODM) – which will likely shape cancer care pathways and software definitions across India (and perhaps beyond) for years to come.

And these are lessons that will significantly impact the cancer care landscape of the country at large, as this learning and the leveraging of newer pathways and technologies will help take the fight against cancer incisively forward.