Now Reading: Rare-disease push seeks Amul-style patient data cooperative
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Rare-disease push seeks Amul-style patient data cooperative
Researchers have proposed a Patient Data Collective, modelled on the Amul dairy cooperative, to pool medical records of Indians with rare diseases and accelerate drug development. The collective would hold patient data…
Researchers have proposed a Patient Data Collective, modelled on the Amul dairy cooperative, to pool medical records of Indians with rare diseases and accelerate drug development. The collective would hold patient data on their behalf, return revenue to them, and use AI analytics with safeguards.
The Indian Council of Medical Research already runs a rare-disease registry that has collected data on about 4,000 patients from 19 hospitals over five years. But the group behind the proposal argues this is too small a sample for India's population, and that a flexible, patient-centric portal is needed to aggregate records from hospitals, the Ayushman Bharat Digital Health Mission, and advocacy groups.
The authors say the cooperative can help design better clinical trials and secure regulatory approvals faster, citing how patient data on spinal muscular atrophy helped prove treatments work. The next step is to set up the portal and backend database, which the group says is feasible based on similar platforms operating in the US.
Indian Opinion Analysis
A patient data cooperative model makes practical sense in India because the rare-disease patient pool is tiny: the ICMR's own registry covers only about 4,000 patients from 19 hospitals over five years, a fraction of the estimated 70 million Indians who may have a rare condition. Without aggregated real-world data, drug makers cannot design trials that satisfy the CDSCO's efficacy requirements, leaving patients reliant on expensive imports or no treatment. The key challenge is consent architecture: India's Digital Personal Data Protection Act 2023 requires explicit, granular consent for each data use, which a cooperative model with patient-majority governance could satisfy more trustworthily than a purely government-run registry. The immediate watch item is whether the ICMR or the health ministry picks up the cooperative proposal as an official framework, which would give it the legal backing and funding needed to build the portal.
Source: thehindu.com
This story was synthesised by AI from the source linked above.
