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Janani Suraksha Yojana – an assessment

Concerns about India’s high maternal and infant mortality rates urged the state to introduce the Janani Suraksha Yojana (JSY) in 2005. This article takes a sample of 9504 households over 471 villages (all in low-performing states) to assess the performance of JSY with respect to a few key parameters. Initially the eligibility criteria for JSY beneficiaries were the same for women across high- and low-performing states; but certain changes were made in the scheme for women from the low-performing states to be able to get the optimum benefits from the scheme. Now, women from below the poverty line families who deliver at home are eligible for benefits, unlike those in high performing states. However, only 11% of all women delivering at home were actually receiving the money, often in instalments, and they had to travel to the nearest institution for it, in contravention of the JSY guidelines.

Further, the accredited social health activists (ASHAs) were underperforming, and the authors suggest that delay in their payments is a major reason for this. The authors found that the majority of women who deliver at home are from the lowest socioeconomic classes and argue that they should be the primary focus for the ASHAs.

The article ends with a set of speculations on the reasons why women abstain from accessing the institution. Cultural mandates urging the preference for home deliveries, problems of accessing the institution, lack of awareness about the benefits of institutional delivery, and considerations of expenses and inadequate infrastructure at the institutions are some of them.

Dongre A, Kapur A. How is Janani Suraksha Yojana performing in backward districts of India? Econ Pol Wkly. 2013 Oct 19; XLVIII(42):53–9. Available from: http://ssrn.com/abstract=2197248 or http://dx.doi.org/10.2139/ssrn.2197248

Using technology to enable autonomy

Deep brain stimulation (DBS) is increasingly being used in the treatment of motor functioning and mood disorders. Its use has sometimes led to unintended psychiatric symptoms, including positive or negative “complications”. This has important consequences for the patient’s sense of identity and agency. This is true for other brain-based interventions as well. However, what is unique to DBS is that (i) its influence on identity can be dissociated by deactivating the device and (ii) an identity change is observed by the family and friends of the patient; but no discontinuity is experienced by the patient herself. By analysing a particular case, the authors show that such changes can be experienced as a threat to one’s sense of agency and free will. The authors define free will as “the capacity to initiate and execute plans of action.” They argue that the deep brain implant should be viewed as an enabling tool which helps the patient recover a sufficient conscious control over her thought and behaviour to feel that she is their genuine source, rather than that something alien has replaced her authentic self as the agent. The authors conclude that by allowing for key brain functions to be studied in real time, the DBS technology can yield some important insights regarding the essential philosophical question of “who we are.”

Lipsman N, Glannon W. Brain, mind and machine: what are the implications of deep brain stimulation for perceptions of personal identity, agency and free will? Bioethics. 2013 Nov;27(9):465–70. doi: 10.1111/j.1467-8519.2012.01978.x

A case for open patient-level data in clinical trials

In this article, the authors, as representatives of the European Medicines Agency, state the case for open access to patientlevel data in clinical research. Firstly, access to full data would lead to improvement in the design and analysis of trials by (i) enrichment (reducing the necessary sample size); (ii) allowing for comprehensive quality-controlled databases whose meta-analyses could inform future projects; and (iii) enabling historical controls to be used in research on rare diseases where randomised controlled trials are not possible. Secondly, information from previous trials about the heterogeneity of treatment effects will increase the value of the drug in the marketplace. Thirdly, companies would have to invest less in presenting comparative-effectiveness information about their product instead of running head-to-head trials on the same product. Lastly, it will reduce duplication costs as drug developers will cease to pursue research where previous attempts have shown the futility of a similar effort. Pharmaceutical industry organisations have resisted openaccess to patient- data by raising concerns about “free-riding” that would diminish the incentive for biomedical research. While the authors acknowledge the importance of protecting intellectual property rights, they argue that it would be cheaper and more beneficial for these agencies to participate in a managed-release environment for sharing patient-level data while ensuring patient privacy.

Eichler HG, Pétavy F, Pignatti F, Rasi G. Access to patientlevel trial data – a boon to drug developers. N Engl J Med. 2013 Oct 24;369(17):1577–9. doi: 10.1056/NEJMp1310771
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