Healthcare leaders, policymakers and patient advocacy groups have called for a National Patient Charter to strengthen patient representation in healthcare policymaking and make the health system more patient-centric.
The call was made at the National Leadership Roundtable on Patient Centricity, organised by the Integrated Health and Wellbeing (IHW) Council in partnership with the Indian Medical Parliamentarians Forum (IMPF). The roundtable brought together senior clinicians, policy experts, patient advocacy groups and pharmaceutical industry representatives to discuss gaps in patient representation and access to care.
Kamal Narayan, CEO, IHW Council, said,“Healthcare must be designed around the patient. Whether we plan, build, regulate or facilitate healthcare, the patient must remain at the centre. A strong patient-first approach can make healthcare more efficient, effective, accessible and affordable for everyone.”
Access to advanced treatments
Patient advocates representing lung cancer, thalassemia, spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS) highlighted challenges patients face in accessing high-cost and targeted therapies. They called for faster access to advanced treatments and their inclusion under government health schemes including Ayushman Bharat and CGHS.
“Cancer care cannot be determined by where a patient lives or what a patient can afford. Patients need timely access to the right therapies, affordable medicines and clinical trials, irrespective of their location or economic background,” said Dr. Vivek Tomar, cancer patient advocate and co-founder of ALK Positive India.
He added that patients and caregivers should have a meaningful role in policymaking to ensure healthcare decisions reflect the realities of people living with disease.
Dr Shivaji Kalge, Lok Sabha member from Latur and a member of the IMPF, who attended the roundtable as chief guest, emphasised the importance of taking patient and healthcare professional concerns into account while shaping health policies and programmes.
“Patient-friendly policies must remain at the centre of healthcare planning,” Kalge said, adding that the IMPF has an important role in bringing patient and healthcare concerns before policymakers.
Participants also highlighted gaps earlier in the care pathway, including limited access to newborn screening outside private urban hospitals. They emphasised the importance of early identification and intervention, while recognising the role of families and caregivers in long-term care.
The discussions were structured around five pillars of the IHW Council’s 10X Principle of Patient First Care — availability, accessibility, innovation, quality of care and shared decision-making.
India’s growing disease burden
The need for stronger patient-centric policies was discussed against the backdrop of India’s growing disease burden. Oncologists at the roundtable cited an estimated 1.5–1.6 million new cancer cases annually in India, with the burden projected to double over the next two decades. Tobacco, obesity and pollution were identified as major preventable risk factors, highlighting the need to strengthen prevention alongside diagnosis, treatment and follow-up care.
Dr. Avinash, DADG,NCD & Patient Safety Division, Directorate General of Health Services, Ministry of Health and Family Welfare, highlighted the role of prevention and health promotion, noting that more than 27 national health programmes under the National Health Mission focus on these areas.
Government efforts to strengthen cancer care and screening infrastructure, including the expansion of district cancer care centres, were also discussed.
The roundtable further drew attention to the needs of children and families dealing with neurodevelopmental disorders.
“Neurodevelopmental disorders, including autism and other neurological conditions, need to be recognised as an important public health priority,” said Dr. Shafali Gulati, child neurology and neurodevelopment, during the discussion.
Noting that these conditions require timely identification, early intervention and continued support across the lifespan, Dr Gulati said healthcare systems must look beyond diagnosis and treatment to address the needs of families and caregivers, who remain an integral part of long-term care.
Call for National Patient Charter
The discussions culminated in a strong call for a National Patient Charter that would incorporate disease-specific patient voices, positioning patient representation at the heart of India’s healthcare policymaking.
Key recommendations included harmonising government health insurance schemes to improve access to high-cost therapies, enabling faster clinical trial access for Indian patients, expanding patient navigator programmes, strengthening newborn and rare disease screening, and increasing safety scrutiny of generic versions of high-cost biologics.
Participants agreed that a formal charter, shaped directly by patient advocacy groups, would give lasting structure to the patient voice in health policy.
The roundtable is the first in a series of discussions leading up to the 6th Patient First Summit 2026, scheduled to be held in Mumbai on October 23 under the theme, “Redefining Healthcare: Where Every Patient Matters.”
The summit will take forward the recommendations and explore how healthcare stakeholders can work towards a system where every patient matters.
