A citizen data transfer deal older than the Sprinklr agreement has resurfaced, loaded with some uncomfortable questions for the LDF government in Kerala.
An expose by The Caravan magazine shows that the LDF has reintroduced a health survey in December 2018 that it, while in opposition, had forced the former UDF government to wind up on the grounds that citizen data were shared with a Canadian-based private research institute.
The report says that nothing much about the survey has changed, except perhaps the name. If during the UDF tenure it was called Kerala Health Observatory and Baseline Survey (KHOBS), under the LDF it was rechristened KIRAN (Kerala Information of Residents - Aarogyam Network).
All the key individuals and institutions that were part of KHOBS regrouped after the LDF came to power to revive the survey as KIRAN. They are Rajeev Sadanandan, who was made additional chief secretary (health) when the LDF took over and is now the COVID-19 advisor to the government; Dr K Vijaykumar, a professor at the Government Medical College in Thiruvananthapuram; Salim Yusuf, a professor at the McMaster University in Canada who heads the Canada-based entity Population Health Research Institute (PHRI); and Dr K R Thankappan of Achutha Menon Centre for Health Science Studies.
The magazine has pieced together its report from a stash of e-mail correspondence, which The Caravan says was shared by a "whistle-blower".
When Rajeev Sadanandan, who was health secretary when KHOBS was carried out and left for Delhi in 2013, returned as health secretary in 2016, here is what Dr Thankappan wrote to Sumathy Rangarajan, a programme coordinator with PHRI, “Mr rajeev sadanandan took charge. Coast is clear. Shall v plan a go?”.
Salim Yusuf, the PHRI head, was quick to set the ball rolling. "We need a new name for the same study (there are still antibodies to the Old study), we need to get the Minister on side, as well as the new CM and then develop a communications strategy ahead of starting to get the Press on side," he said in an email to Rangarajan and Thankappan.
Data mining
Data transfer to the PHRI was a precondition for KIRAN to take off.
In fact, the PHRI was granted access to citizen data in 2013 when a 'mismatch' was found in the data collected as part of the pilot study for the KHOBS. To fix it, it was said a team of statistician, data manager, epidemiologist and programmer, from PHRI, Canada had to be given access to the pilot database. This was promptly granted by Sadanandan, who was then the health secretary.
However, any project with foreign assistance required the approval of the Health Ministry Screening Committee (HMSC). Before the HMSC could respond, the LDF led by opposition leader V S Achuhanandan forced the UDF government to close down the survey. A few months later, in 2014, the then Health Minister V S Sivakumar told the Assembly that KHOBS did not get HMSC approval.
Conveniently left out
When the survey was launched in December 2018 with a new name, the government order said it was to identify prevalence and risk factors of non-communicable diseases, same as during KHOBS. Further, it said the data collected would include details about diet, exercise, lifestyle, drinking and smoking habits, diseases and methods of treatment.
The questionnaire-based survey was to elicit information from 10 lakh people.
The order said KIRAN would be conducted with the support of the Achutha Menon Centre for Health Science Studies (AMCHSS), the State Health Systems Resources Centre (SHSRC), a technical support body in the health department, and the E-Health Kerala.
There was no mention of PHRI and its funders, McMaster University and Hamilton Health Sciences, a network of hospitals that is known for its drug research and clinical trials.
Shailaja defends deal in Assembly
When the Canadian connection was questioned in the Assembly in 2019, Health Minister K K Shailaja gave an argument similar to the one trotted out by the government during l'affaire Sprinklr: that the PHRI was involved in developing a high-end software for which expertise was not available in the country.
She also said a request to collaborate with the PHRI was pending before the HMSC. However, contradicting the minister, an RTI reply by the state Directorate of Health Services (DHS) said no agencies outside India were associated with KIRAN and also underlined that there was no communication between it and the PHRI.
Further, Shailaja said the data collected by the health department was safe at the State Data Centre and termed as "baseless" the allegation of sharing data with the Canadian company.
"But the emails indicate that data-sharing was an essential component of the understanding between the Kerala government and the Canadian medical research organisation, and the state appears to have obliged," The Caravan report said.
Since the HMSC has still not approved the collaboration with the PHRI, the report also says that the Canadian institute's involvement in data collection and analysis is illegal.
Big money behind big data
The report further suggests that here could be commercial interest behind the harvesting of medical data. "The PHRI is a private foreign institute that collaborates with pharmaceutical companies on clinical trials and drug research," the report said.
The commercial promise of medical data, the report says, is revealed by the huge sums of money the PHRI has put into the survey. In 2013, in an email correspondence in 2013, the PHRI head says that KHOBS would "cost us about $250,000 to $300,000 per year for the next five years."
Nonetheless, the report also says that it has no information on how the PHRI uses the data it has collected.
The report also reveals that the earlier version of the survey, KHOBS, was not just an observational study. It had an intervention angle to it. The promoters of the survey wanted to indirectly prod the Kerala government to seek such a medical intervention so that they could suggest the right pills for hypertension, diabetes and other non-communicable diseases.
A particular polypill (a combination drug) called Polycap was to be procured from Gujarat-based Cadila Pharmaceuticals and distributed free for the KHOBS pilot study.
The PHRI head Yusuf said during a meeting that Cadila had committed to providing three to six months of free supply for up to 500 to 1000 people "as long as we can collect some key and simple data systematically, analyse and publish it.” “It will help the Kerala Project and also Cadila,” he added, The Caravan report says.
The report also says that it is still not clear whether such an intervention strategy is being used for KIRAN.
