digital healthcare

Armed with Phones and Spreadsheets, How These Teenagers Took on the Second Wave

It’s 5 am and the DMs in Dasnoor Anand’s inbox are overflowing — requests for ICU beds in Pune, an enquiry about Remdesivir in Mumbai, search for oxygen cylinders in Lucknow, and many more such please for help. Anand tries her best to reply to everyone. She has only three hours to sleep before it’s time to wake up for online lectures.

This is what April and May 2021 looked like for several teenagers part of student organisation ‘Silence The Violence (STV)’.

With the second wave of COVID-19 slamming into India with an unexpected ferocity, the members of STV have been saving lives while simultaneously attending lectures and preparing for exams. The group consists of girls from all over India, ranging from those in Class 11 to those in first year of university.

In their bid to help out, STV (@stvorg) amplified the availability of resources like hospital beds, ventilators, oxygen, and even tiffin services on its Instagram account. The team gathered information through Twitter handles, personal contacts and other youth organisations, and grouped resources by city or state. They called each hospital and oxygen supplier personally to verify details before posting it. On a backup account (@stvorg_backup), a colour-coded list of resources was regularly updated – green for hospital beds, grey for ambulance services, yellow for food and blue for oxygen.

The motivation behind this venture? Nandini Nimodiya, 17, a member of the Crisis Team answered, “We are all students stuck at home. Social media is the only power we have.”

The team started with two-hour shifts but had to dial it up to five-eight hours due to the number of requests. Each day, STV got approximately 100 leads for different resources from all over the country. Out of these, half got exhausted by the time they called to verify. But of the remaining 50, STV was passing on 15-20 resources to people messaging for help.

“Even if we’re able to save one life at the end of the day, it makes everything worth it,” said Anand, 19, founder of STV, adding that they managed to help roughly 15 people daily.

The group made use of the latest ‘guide’ feature on Instagram, creating city-wise guides for all essential services. A guide is a collection of posts from various accounts that have information about a particular city’s resources. Followers of STV found this specific and timely. Shreya Joshi, 22, a resident of Pune says, “I wanted to find an oxygen concentrator for my father. All the contacts I had were busy or switched off. That’s when I found STV’s ‘Pune Guide’ on Instagram. It directed me to verified suppliers, and I got what I needed.”

STV started making city-wise guides when they realised that residents of small towns did not know whom to contact for resources. They started with major cities like Pune and Delhi but have compiled 12-city guides so far. They have even expanded to state level guides, with over 15 state guides in place, including Chhattisgarh and Uttarakhand.

STV’s expansive list of resources has helped make it a fast-growing account on Instagram. Over the course of five days, the number of followers shot up from 1,200 to 10,000. Currently, they’re reaching 11,100 people via social media.

Since the number of SOS calls has decreased, STV is now devoting time to spreading awareness about COVID-19. This is a major part of its threefold mission statement ‘Action-Advocacy-Awareness’. The volunteers are making informative posts on topics like ‘Covid and pregnancy’ or ‘mental health in Covid’. STV held its first online mental health event ‘Horizon’, where it partnered with certified psychologists to provide three days of free counselling sessions, seminars and workshops. This was followed by an online concert where young artists came together to unwind.

The team consists of 45 members between the ages of 16 and 20. Of the 45, 20 members have been completely devoted to the Covid crisis. Fifty additional volunteers were also roped in to help. Most of the members are from Mumbai and Pune, followed by a few in Andhra Pradesh and the Northeast. Over the past few weeks, STV has also managed to recruit volunteers from Karnataka and Kerala too.

Around 85% of the team is made up of women, with an all-girls core team. A point of grievance for these young girls is that they are often misgendered by people who contact them. They are addressed as ‘sir’ or ‘bhaiyya’. “We tell them we are women led, and that they can call us ‘ma’am’ or ‘didi‘,” says Nimodiya.

Project S.A.F.E (@project_s.a.f.e) is another all-girls organisation that has been amplifying Covid resources, specifically in Pune. This team consists of five girls from the Pimpri-Chinchwad College of Engineering. The girls spent all day finding resources – except from 3 pm-5 pm, as that’s when they were writing their exams! These engineering students collaborated with their friends interning at medical colleges to provide people with accurate information about availability of beds and medicine.

With 20 requests daily, at least 15 patients were guided to the required resources. Devika Chopdar, 20, founder of Project S.A.F.E says, “I didn’t know social media could have such a huge impact. So far, my profile has only been about myself. Seeing people receive life-saving facilities through it is a new experience.”

These local Covid helpers received a request for a ventilator bed at 1 am one night. None of the hospitals were answering their phones. Project S.A.F.E then circulated the request on social media. Within the next one hour, the Pune online community procured a ventilator and passed this information on to the critical patient.

Student communities across the country stepped up to fight the second wave. Delhi University’s Miranda House created a Covid helpline to assist residents of Delhi with quick updates on resources. A group of 22 student artists and poets from all over India came together for a night of music and poetry titled, ‘In The Dark Times There Will be Singing’, and raised Rs 1,47,000. All funds were donated to communities hardest hit by the second wave of COVID-19. Generating finances, even from outside the country. US-based Princeton alumnus Shreyas Lakhtakia and Julu Beth Katticaran, offered career counselling sessions to raise money for Covid charities in India.

The Indian student community that aided the country in its hour of need is here to stay and is only growing stronger. Even the girls of STV are planning more posts, events, and community building in the months to come. All while preparing for the upcoming Class 12 board exams, of course!

Featured image credit: antiopabg/Pixabay; Editing: LiveWire

This article has been republished from LiveWire with permission of the author.

Aditi Dindorkar is a second-year student at Ashoka University. She is pursuing a major in English and Creative Writing, and a minor in Media Studies. This report is written as part of her course, Introduction to Newswriting and Reporting.

We publish all articles under a Creative Commons Attribution-Noderivatives license. This means any news organisation, blog, website, newspaper or newsletter can republish our pieces for free, provided they attribute the original source (OpenAxis).

National Digital Health Mission & Privacy: Should we be worried?

On the 15th of August, Prime Minister Modi announced the new National Digital Health Mission and its pilot launch in six government territories. According to the policy draft, this new mission will radically change healthcare – lowering cost, increasing transparency, and bringing healthcare services even to the most remote corners of the country. However, ever since its announcement, many have been voicing privacy concerns.

While some believe that this will be a revolutionary change to India’s Healthcare system, making all things healthcare easier than ever before, others argue that such a program is unnecessary and distracts us from real issues. According to the Indian Medical Association, such a plan may distract us from real problems such as the lack of sufficient and proper medical health structure. The association also said that strengthening public health infrastructure and addressing social determinants of health should be our priority right now, and the new plan will possibly divert funds from these issues, further jeopardizing public health care. The biggest concern, however, is confidentiality and privacy.

Confidentiality and health privacy of patients is one of the most fundamental principles of Healthcare. This is not only to protect the patient from any kind of stigma and discrimination but also to establish trust between health facilitators and patients. Another important cause for this is the idea of self-ownership and bodily integrity; as rightful owners of our bodies, only we have the right to own our biological data and decide with whom our data is shared. The Digital health mission repeatedly emphasizes its stringent security and consent-based shared guidelines on the policy document but many still believe that the national health mission could pose a grave threat to the privacy and security of citizens.

One reason behind this is the numerous privacy breaches of the past. With data as sensitive as this, how can we trust the government to believe the same will not happen again? The Aadhaar, for example, has been a subject of data leaks on far too many occasions, yet there is still no accountability from the government. Furthermore, if our Health IDs will be connected to our Aadhaar, the risks of our personal health data being accessed and misused by an unauthorized person or entity further increase. Similarly, with the Aarogya Setu app, there was no transparency on whether data collected was being deleted after patients recovered and how the app functions on the phone due to the code not being open source.

Another area of concern is the possibility of our health data sold off to private companies. According to the National Health Data Management policy, anonymized, de-identified, and aggregated data may be made available to organizations (page 21). In the past year alone, there has been an explosion in the number of cases of big tech and pharma companies collecting personal health data. The NHS was found to be providing data to Amazon, Google bought the health records of 50 million Americans from insurance companies, and pharmaceutical company GlaxoSmithKline paid DNA testing company $300 million for customer data. Big companies are chasing after our data, and with the implementation of the National Digital Health Mission, India might become a new market for getting such data.

Big tech companies like Google, Amazon, and Apple are collecting health data for the use of building their own AI Health technologies. While these AI health technologies could prove to be highly useful and beneficial in the future, there are still concerns about whether these companies are using this data ethically. For example, last year when Google bought personal data from insurance companies and medical institutions in the USA, we found that even though those records were stripped of identifying details such as name, contact information. Google combined these records with the information Google already had from the database. This included all personal information collected form smartphones that could easily establish the identity of the patient’s medical records. This is not just true for big tech companies, research has shown that even anonymous information can be easily re-identified, even if data sold is anonymized and aggregated. How do we know that big tech companies will only use this research as they claim, and not for profit? Although tech companies say this data will only be used for research, an anonymous whistleblower has claimed Google does use this data to mine patient information, run analytics and then sell this data to third parties to be able to target healthcare ads based on the patient’s medical history.

The truth is that there is no guarantee of how this data will be used. Although personalized healthcare ads might be a relatively light issue, we cannot even comprehend how this data could be used and what harm it could cause to us in the worst-case scenarios. The Cambridge Analytica scandal is one example of how our data was used against us to sway elections. With our sensitive health data involved and big tech companies beginning to work on AI based healthcare, the implications of possible data misuse could be even graver.

Besides big tech companies, pharmaceutical and insurance companies are chasing after our medical data. Pharmaceutical companies have also been found to use digital record-keeping systems in hospitals to gather information and use it to sell drugs. There are also some findings that insurance companies are beginning to gather data on race, marital status, how much TV you watch, and even the size clothing you wear. With our entire medical history available, insurance companies would have more power than ever before, patients could be denied health coverage or be charged higher based on their medical history or even one’s genetic data.

While it is true that digitizing the healthcare ecosystem in India could be beneficial for streamlining healthcare, the privacy concerns are difficult to ignore. Along with bringing transparency and accessibility, it also opens new doors for data misuse and possible stigma and discrimination. Without a data protection law in place and actual technological infrastructure to protect our data, the implementation of this project is dangerous.

Aradhya is a psychology major at Ashoka University. In her free time you’ll find her reading books, drinking chai and cycling at odd hours.

We publish all articles under a Creative Commons Attribution-Noderivatives license. This means any news organisation, blog, website, newspaper or newsletter can republish our pieces for free, provided they attribute the original source (OpenAxis).