Challenges faced and lessons learnt while trying to review CHD care in India from parents’ perspective

Congenital heart disease (CHD) remains a major pediatric health challenge in India, yet the lived experiences of families navigating public schemes such as Rashtriya Bal Swasthya Karyakram (RBSK) and Ayushman Bharat are largely absent from research and policy discussions. Motivated by wide variations in access, referral pathways, financial protection, and follow-up support across states, we attempted a parent-led, multi-state review to understand how these schemes function for individuals with CHD. This commentary reflects on that attempt and highlights gaps not captured in administrative datasets, which typically report aggregate counts rather than information meaningful to end users. As parents without institutional affiliation, we quickly encountered structural barriers that made even a low-risk qualitative study difficult to initiate. ICMR provides for "Independent ECs", but independent researchers have no clear way to access or identify committees that can review qualitative, parent-led work. This limits practical feasibility. These challenges illustrate that community-initiated research is difficult to undertake without support or affiliation from researchers or clinicians within established institutions. Reflecting on this journey, we suggest that India needs dedicated mechanisms for community-led and parent- or patient-led research, clearer publishing guidelines, and national oversight structures (for policy implementation) that include patient and parent (or caregiver) representatives. Incorporating lived experience into CHD policymaking is essential for creating pathways that are realistic, equitable, and aligned with the everyday challenges faced by the CHD families.