Over the last decade, India has seen a sharp increase in the number of cancer cases. Yet, much of our treatment decisions are driven by cancer data sets from the western population. Though these datasets are extremely valuable, it does not give a true picture of how cancer presents itself and progresses in the Indian population.
If we take the example of breast cancer, the way the disease is diagnosed among Indian patients is different from how it appears in western markets such as the US (North America), and Western Europe. In the Indian subcontinent, patients are diagnosed at a much earlier age and majority of them are pre-menopausal and at a slightly later stage at presentation. Lack of health insurance coverage, no regular mammography, limited awareness among patients and taboo associated with breast cancer are some of the reasons for later stage diagnosis. Though there has been a significant shift over the last two decades, women still hesitate to undergo early screening and they mostly visit a doctor only once they find a lump.
As a result, tumours in India are usually ~2 cm at diagnosis. In the West, because mammography screening detects tumours early, the size of the tumour at diagnosis is often under 1 cm. This difference is extremely important. Factors such as age of the patient, tumour size, lymph node involvement, and biomarker expression directly impact how oncologists decide on surgery and treatment. This is why understanding Indian tumour datasets is critical to optimally treat Indian patients.
Efforts underway to build Indian cancer genomic data
In the last decade, there is growing awareness that Indian patients are different. Not just in cancer biology but even in basic health parameters like cholesterol levels, blood pressure, body weight, and height. We already accept that these parameters need to be standardised for specific populations and continents. The same also applies to cancer.
For a long time, we did not have Indian cancer genomic data and relied almost entirely on Western data. Attempts are now being made to build this ecosystem. The Indian Cancer Genome Atlas (ICGA) and other similar consortia are sequencing Indian patient’s tumours and multiple cancer types. Once ICGA data becomes available, we can compare it with global datasets like The Cancer Genome Atlas (TCGA), which is largely based on Western population. This comparison will help us understand how genetic mutations, gene duplications, and gene alterations differ between Indian tumours and Western tumours and such attempts are well underway.
Barriers to data collection – A standard questionnaire for every cancer type
Processes for data collection exist, but the devil is in the detail. Every patient’s history must be taken carefully. The doctor/ nurse taking clinical history of the patient must ask the right questions, and the patient must recall important details such as family history of cancer. If a patient remembers that a grandmother, aunt, or maternal relative had cancer, the doctor may suspect certain mutations and suggest genetic testing before treatment. Missing this information because the patient was not asked or did not recall it can mean lost diagnostic opportunities.
A standardised questionnaire for every cancer type can capture a patient’s clinical history consistently and help oncologists plan therapy. Basic questions on family history, age of onset, detection method, and relatives’ ages at diagnosis should be mandatory and this data is of great value to assess future trends in cancer as well.
Over treatment and under treatment – risks of relying only on western datasets
Relying on Western data can lead to both over-treatment and under-treatment. For example, when Angelina Jolie was diagnosed as BRCA-positive and opted for bilateral mastectomy, it created a strong public narrative. While BRCA mutation is important, it cannot be the sole basis for such decisions. Other factors such as age at onset, age of affected relatives, type of cancer, and additional mutations, polymosphisms etc must also be considered since risk of developing breast/ovarian cancer is polygenic/multifactorial. Otherwise, we may end up with non-beneficial surgical procedures.
Similarly, chemotherapy guidelines based on Western data may not fully apply to Indian patients, where other biological/clinical parameters about breast cancer onset and underlying tumor biology are different. We need Indian data to understand what the minimum effective chemotherapy should be for such patients, so that treatment is optimal and not excessive.
Building trust for Indian data
Indian research should be assessed holistically and without bias, and our own data must be used to update protocols. One of the biggest challenges is the perception that Indian research is not up to the standards of the west. We need a change in mindset and we need to start trusting Indian research and data with appropriate guardrails. Indian research must be assessed holistically and without bias. If research is rigorous and well-published, there is no reason not to trust it or use it.
We should not always wait for validation from the West. If a mutation is found in Indian patients, even if it is absent in Western datasets, it should not be ignored. The absence of a mutation in Caucasian populations does not make it insignificant.
Rethinking cancer care delivery
Cancer care delivery in India also needs to change. Each region has its own challenges — traffic, patient volumes, and severe shortages of surgical, medical, and radiation oncologists. The number of doctors is far lower than the patient load. Because of this, doctors have very little time for research. Policies must allow clinicians the time and flexibility to do research, innovate, and plan trials. Retaining talent within India and making full use of their expertise is critical.
If we address these structural issues alongside robust and holistic data generation, we can fundamentally transform cancer care in India.
Indian data, Indian research, and Indian solutions are not optional anymore. They are the foundation for truly personalised, value-based oncology care.