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BackgroundIndia is a country with vast unmet medical needs. eHealth has the potential to improve the quality of health care and reach the unreached. We have sought to understand the kinds of eHealth programmes being offered in India today, the challenges they face and the nature of their financing.MethodsWe have adopted an interview-based methodology. The 30 interviews represent 28 organizations, and include designers, implementers, evaluators and technology providers for eHealth programmes.ResultsA range of programmes is being run, including point-of-care in rural and urban areas, treatment compliance, data collection and disease surveillance, and distant medical education. Most programmes provide point-of-care to patients or other beneficiaries in rural areas. Technology is not a limiting factor but the unavailability of suitable health personnel is a major challenge, especially in rural areas. We have identified a few factors that help this situation. Financial sustainability is also a concern for most programmes, which have rarely been scaled up. There are recent for-profit efforts in urban areas, but no reliable business model has been identified yet. Government facilities have not been very effective in eHealth on their own, but collaborations between the government and non-profit (in particular) and for-profit organisations have led to impactful programmes.ConclusionsIt is unlikely that eHealth will have widespread and sustainable impact without government involvement, especially in rural areas. Nevertheless, programmes run solely by the government are unlikely to be the most effective.

To the Editor -Genomic surveillance of the evolving SARS-CoV-2 strains is an important tool for helping control the pandemic 1 . For efficient surveillance, the first major requirement for analysis of how the virus is evolving and spreading is the availability of all sequenced genomes on an open-access platform that is accessible to researchers worldwide. Therefore, soon after researchers became aware of COVID-19, toward the end of 2019, the Global Initiative on Sharing All Influenza Data (GISAID), an existing platform for sharing influenza virus sequences, began receiving deposits of SARS-CoV-2 genome sequences. Here we report an analysis of the median collection to submission time (CST) lag for SARS-CoV-2 sequences to GISAID on a country-by-country basis. Our results suggest that researchers in the United Kingdom are the fastest, logging sequences in a median time of 16 days, which is not only more than 5 times as fast as the upload times of sequences originating from industrial countries such as Japan or Canada, but also 18 times as fast as that of Qatar, among the countries that have sequenced over 1,000 genomes.As of now, GISAID is the largest open-access portal, hosting the genome sequences and related epidemiological and clinical data of more than 1.7 million SARS-CoV-2 strains. Thanks to ongoing genomic surveillance using GISAID data, several new SARS-CoV-2 variants, such as B.1.1.7 (Alpha; first identified in the United Kingdom), B.1.351 (Beta; first identified in South Africa), B.1.1.28 (Gamma; P.1, first identified in Brazil), B.1.617.2 (Delta; first identified in India), B.1.617.1 (Kappa; first identified in India), P.3 (Theta; first identified in the Philippines), and B.1.427 and B.1.429 (Epsilon; first identified in the United States), have been identified 2-5 . This information has been used to update public health policies for the control of COVID-19 infections 6,7 .Considering the benefits of genomic surveillance 6,8 , scientists have pressured countries to increase their sequencing capacity, and this has led to several initiatives, such as COG-UK

Background Rare diseases (RDs) affect a small percentage of the population but can be severely debilitating and life-threatening. Historically, patient groups (PGs) have been the prime movers in raising awareness about these diseases and advocating for national supportive policies. They have also driven relevant research programs. In India too, PGs have made significant contributions to the national RD ecosystem. Objective To assess the contribution of various Indian RD PGs, we carried out an interview-based study of 19organizations. This study aims to highlight the origins and achievements of these groups and the challenges that they have faced. The study also helps to capture the changes in the RD ecosystem that have taken place in recent years. Result Of the 19 PGs, two are umbrella organizations, two are other organizations of national scope and 15 are disease specific groups. 14 interviewees were affected by an RD either directly or through a family member. Lack of awareness about RDs in the medical community was the biggest challenge, leading to a delay in diagnosis and subsequent management. Only two out of the 15 conditions have a definitive treatment. However, many of the diseases can be managed with replacement therapies administered for the patient’s entire life, or other supportive therapies. Most diagnostics and treatment regimens that are available globally are now available in India but are expensive and usually available only in a few major cities. These problems are compounded by a lack of medical insurance schemes and government policies to support these patients. The biggest achievement of the PGs was the passing of National Policy for Treatment of Rare Diseases in 2017, unfortunately since put in abeyance. If reinstated, and properly implemented, this policy could significantly improve RD management in the country. Conclusion PGs have had a significant role in bringing diagnostics and treatments to India. They have also raised awareness about RDs and related issues such as newborn screening, prenatal diagnostics and genetic counselling. This study highlighted the recommendations of various PGs. The government should address these recommendations and institutionalize the participation of the PGs in formal decision making. Electronic supplementary material The online version of this article (10.1186/s13023-019-1093-6) contains supplementary material, which is available to authorized users.