Healthcare leaders call for a national patient charter

Gaps in patient representation, access to high-cost therapies and disability-accessible healthcare emerged as key concerns at a National Leadership Roundtable on Patient Centricity convened by the Integrated Health and Wellbeing (IHW) Council in partnership with the Indian Medical Parliamentarians Forum (IMPF). The roundtable brought together clinicians, policy experts, patient advocacy groups and pharmaceutical industry representatives to discuss patient participation in healthcare policymaking 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.”

A key issue discussed was access to high-cost and targeted therapies. Patient advocates representing lung cancer, thalassemia, spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS) called for faster access to advanced treatments and their inclusion under government health schemes including Ayushman Bharat and CGHS.

Dr Vivek Tomar, Cancer Patient Advocate and Co-Founder, ALK Positive India, said, “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. Patients and caregivers must also have a meaningful place in policymaking, so that healthcare decisions reflect the realities of those living with disease.”

Dr Shivaji Kalge, Member of Parliament (Lok Sabha) from Latur and member of the Indian Medical Parliamentarians Forum (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.

He said, “As policymakers, it is our responsibility to ensure these ground realities are reflected in government policy. We need to understand the concerns of patients, caregivers and healthcare professionals and take these into account while shaping health policies. Patient-friendly policies must remain at the centre of healthcare planning, and the Indian Medical Parliamentarians Forum has an important role to play in bringing these concerns before policymakers and strengthening the patient voice in decision-making.”

Participants also highlighted gaps earlier in the care journey, including limited newborn screening outside private urban hospitals. They stressed the importance of early identification and intervention, while recognising the role of caregivers and families in long-term care.

The discussion covered five areas under the IHW Council’s 10X Principle of Patient First Care: Availability, Accessibility, Innovation, Quality of Care and Shared Decision Making. Participants discussed the need to incorporate these considerations more consistently into healthcare policies, programmes and services.

The discussions also considered India’s growing disease burden. Oncologists at the roundtable cited 1.5 to 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 among the major preventable risk factors, highlighting the need to strengthen prevention alongside diagnosis, treatment and follow-up.

Dr Avinash, DADG, NCD & Patient Safety Division, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India, highlighted the importance 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 also drew attention to the needs of children and families dealing with neurodevelopmental disorders.

Dr Shafali Gulati, Child Neurology and Neurodevelopment, during the discussion said, “Neurodevelopmental disorders, including autism and other neurological conditions, need to be recognised as an important public health priority. These conditions require timely identification, early intervention and continued support across the lifespan. Healthcare systems must therefore look beyond diagnosis and treatment and also address the needs of families and caregivers who remain an integral part of long-term care.”

Call for a National Patient Charter

Participants called for a National Patient Charter that incorporates disease-specific patient voices and provides a framework for patient representation in healthcare policymaking. Recommendations included harmonisation of government health insurance schemes for costly therapies, faster clinical trial access for Indian patients, expansion of patient navigator programmes, wider newborn and rare disease screening, and stronger safety scrutiny for generic versions of high-cost biologics.

Participants also discussed the need for a formal charter shaped with inputs from patient advocacy groups to strengthen the role of patient perspectives in health policy.

The roundtable is part of a series of discussions ahead of 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 is expected to focus on issues related to patient representation, access and participation in healthcare decision-making.