kidney transplant hospitals to publish patient survival rates: A move towards transparency

NEW DELHI: In a significant move aimed at improving transparency, kidney transplant hospitals across India are now mandated to publish crucial information regarding patient survival rates, deaths, graft failures, and other long-term outcomes. This initiative comes after concerns were raised about the lack of clear data on the performance of transplant centres, leaving potential patients in the dark while choosing their treatment facilities.

The National Organ and Tissue Transplant Organisation (NOTTO) has directed transplant centres to display these statistics on their websites. This action was highlighted by BJP MP Captain Brijesh Chowta, who called attention to the need for better transparency in transplant outcomes.

In a directive issued by Dr. Anil Kumar, the director of NOTTO, state authorities and Union Territories have been instructed to ensure that each transplant hospital prominently features post-transplant outcome data via their website. Furthermore, timely and complete follow-up data must be submitted to the National Organ and Tissue Transplant Registry.

Informed Consent and Comprehensive Information

Hospitals are also required to provide comprehensive information regarding the procedures, risks, and expected outcomes to patients and their guardians before obtaining consent for the surgery. In a representation to the Union Health Minister, Captain Chowta pointed out the deficiencies in tracking the long-term outcomes of kidney transplant procedures, referencing a report from two Mangaluru citizens.

The MP emphasized that public focus tends to rest on successful transplants, while long-term complications, graft failures, and post-transplant mortality are often overlooked and inadequately monitored.

The Need for a National Registry

The letter from Captain Chowta also pointed out the absence of a national registry to comprehensively monitor long-term outcomes, arguing that increased transparency would enable patients to make well-informed decisions.

Dr. Anupam Roy, additional director of nephrology and kidney transplant at Aakash Hospital in Dwarka, Delhi, stated, “Making transplant outcomes public is a landmark step towards transparency and accountability. It will empower patients with objective information… However, these results must be interpreted in the context of patient complexity and risk profile.”

Strengthening Monitoring and Policy Decisions

As per NOTTO, there are currently 824 transplant centres linked to the organ and tissue transplant registry, which are obligated to record transplant and follow-up data through designated login credentials. The organization asserts that enhanced reporting will not only fortify monitoring of transplant outcomes but will also enhance traceability and support evidence-based policy decisions.

Under the new reporting standards, hospitals must disclose statistics including the number and percentage of patients alive, deaths, graft failures, and patients who were lost to follow-up at key intervals: discharge, six months, one year, three years, and five years post-kidney transplantation.