India is dedicated to combating cancer, having expanded access to screening and enabled early detection of the three most common cancers (breast, cervical and oral) through Ayushman Arogya Mandirs. Despite an established cancer care system, patients face growing barriers as cases surge, with 1 in 9 Indians likely to develop cancer in their lifetime.
One major hurdle is the disproportionate concentration of cancer care services in major cities, hindering access for much of the population. Although 50 per cent of the patients are from rural areas, India only has around 2000 oncologists for a crore patients, with half of them situated in just 10 major cities. This leads often to late-stage diagnoses, compelling patients to seek specialised treatment in urban centres.
Moreover, prolonged treatment timelines disrupt the continuity of care and adherence to treatment protocols. With treatments spanning months and requiring lifelong follow-ups, patients frequently shuttle between their local primary healthcare facility and a distant tertiary hospital. The recurring, lengthy commute strains patients and caregivers, who are distanced from family support and have to incur additional costs for travel and accommodation.
Care coordination too suffers in a fragmented healthcare system. Patients navigate multiple healthcare teams across facilities that struggle to function cohesively. While healthcare providers seek comprehensive case histories, they are constrained by manual record-keeping systems that lack longitudinal data storage. Where digital systems exist, they operate in silos. As medical information doesn’t move with the patient between facilities, it leads to repeat tests and high out-of-pocket expenses. Administrative hurdles at health centres further obstruct access to care, requiring patients to repeatedly seek appointments, manage paperwork and endure long waiting times.
Recognising the need for a more integrated approach, harnessing digital infrastructure for interoperability and enhancing access to care is essential for advancing cancer care delivery. The Ayushman Bharat Digital Mission (ABDM) – India’s flagship initiative to build a resilient health ecosystem is at the heart of this transformation. ABDM is laying a patient-first groundwork to enable better last-mile service delivery, patient experience and quality of care across the care continuum.
Screening and diagnosis
A critical first step in a patient’s cancer care journey involves timely screening and detection within their primary care settings. Electronic Medical Records (EMRs), a cornerstone of ABDM, are integral to this process, storing patient health records digitally. With real-time access to a patient’s case history, General Physicians can identify individuals at elevated risk and enrol them for screening. If cancer is diagnosed at a tertiary centre, patients can consent to share their data with local healthcare providers, allowing for uninterrupted care pathways.
Treatment and Follow-up
As treatment begins and patients interact with various healthcare providers, digital medical records become invaluable. These records (including prescriptions, scan reports, test results, etc.) are securely stored in the EMR systems of different hospitals and pharmacies. This ensures all providers have access to up-to-date patient histories, aiding in seamless care coordination and informed decision-making. The portability of these records can simplify referrals and enhance connectivity between facilities, benefiting patients with smoother transitions and reduced costs in their healthcare journey.
Initiatives like the National Cancer Grid (NCG) and Koita Centre for Digital Oncology’s Leading EMR Adopter Program (LEAP) are bolstering the implementation of oncology-specific EMRs within Government and Trust hospitals to improve the availability of crucial medical history. Building upon this progress, the National Health Authority is initiating a pilot with a smaller pool of these hospitals across 8 states to establish a data-enabled cancer-care ecosystem to increase patient convenience and improve quality of care.
Patients and caregivers can conveniently obtain these medical records through the Patient Health Records (PHR) application and have a complete picture of their treatment journey. Linked to the Ayushman Bharat Health Account (a unique identifier), PHR apps empower patients to access, manage and securely share health records with healthcare providers. Using the app, they can receive registration tokens online at the hospital, reducing waiting times and paperwork hassles.
Patients undergoing regular check-ups can utilise teleconsultation services to schedule appointments and seek care online. As a result, they can better access routine and expert care within their local area, alleviating barriers associated with long travels.
Aftercare
Following treatment, if a patient experiences any subsequent health challenges, the medical records captured in EMRs ensure they receive targeted and appropriate care. Healthcare providers can refer to these records to account for the history of cancer treatment, ensuring that care is tailored to the patient’s specific needs.
ABDM’s digitally integrated infrastructure can further augment India’s cancer care ecosystem. Through technological building blocks like unique identifiers and data portability, ABDM enhances detection, treatment and aftercare for cancer patients. Over time, the availability and sharing of high-quality longitudinal, granular and vast data (in compliance with the Digital Personal Data Protection Act 202) can contribute to well-grounded public health research, strengthening clinical practices and care delivery.
The mission’s transformative potential extends beyond cancer to encompass other chronic conditions characterised by high patient-doctor interactions like diabetes, hypertension, nephrology, etc. Thus, we move towards a future where everyone receives comprehensive, quality care for various health concerns.
The article is written by Neel Ratan, Advisor, National Health Authority
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