New Delhi: Almost one in 10,000 Indians suffers from haemophilia, a rare genetic bleeding disease once known as the “Royal Disease" as it afflicted some of the prominent European royalties. Yet, there is little public awareness, no cheap treatment, or any comprehensive health intervention programme to prevent or control this ailment, or help people suffering from this disorder.

Now, a mobile application, Net4Hemo, is providing haemophilia patients an innovative way to learn about staying safe, being prepared, maintaining their treatment plans, and connecting them to peer groups. The application has been developed by Periwinkle Technologies Pvt. Ltd, a Pune-based company co-founded by Veena Moktali and Koustubh Naik.

Net4Hemo was the finalist for the mBillionth Award organized by the Digital Empowerment Foundation 2017 in the ‘Early Stage’ category.

Haemophilia is an inherited bleeding disorder in which a person lacks or has low levels of certain proteins called “clotting factors", as a result of which blood does not clot properly. This leads to excessive bleeding. According to Hemophilia Federation India, there are an estimated 19,858 people with haemophilia in India till 31 March 2017. The annual global survey of World Federation of Hemophilia had in 2016 reported that almost 50% of the world’s haemophilia population lives in India and over 70% of PwH (people with haemophilia) do not have adequate knowledge or access to treatment.

Net4Hemo provides remote consultation from doctors to PwH and help with support through community forums. It also helps interaction of PwH with mentors and grants access to useful resources. According to Veena Moktali, co-developer of the application, this responsive care digital platform not only helps in starting treatment faster and avoiding the problems of travel, wait time, and costs, but also prevents loss caused by delays in treatment as well as loss due to mistreatment caused by lack of information. “There is no such mobile app available anywhere; all healthcare apps primarily focus on patient self-help or doctor discovery or chat with-an-unknown-doctor or uploading EMRs or practice administration or appointments," she says.

Moktali says the development of Net4Hemo was inspired by doctors asking for more regularity in their patients’ bleed reports and patients asking for remote support as they were unable to move.

The duo (Moktali and Naik) had met Sunil Lohade—a paediatrician and haemophilia specialist—and Rohini Dange—a haemophiliac physiotherapy specialist, during a conference and expressed their desire to have a remote monitoring system for the patients so that they would provide data regularly.

“This would not only enable the doctors to help them properly but will also avoid major emergencies for patients because of timely treatment through remote consultation. Subsequently, we also met patients at many events of the Hemophilia Society of Maharashtra and learned that they suffered due to lack of information about the disease," Moktali notes.

The firm has been utilizing various messaging and social media platforms for wider outreach and scale.

It uses existing WhatsApp groups of Hemophilia Society members and Facebook to communicate with target group of users. It has been facing difficulties in reaching out to target patients in remote areas through social media as not many of them are on Facebook and WhatsApp.

Moktali, however, says many of them were reachable through text messages and phone calls. “For doctors, we have mainly used offline modes to communicate so far," she notes.

Moktali says they received a seed grant from the Biotechnology Industry Research Assistance Council, a non-profit set up by department of biotechnology, for the development of Net4Hemo, and are now seeking venture capital investment for future products.

The company has been actively seeking to develop technology solutions for chronic care such as Net4Medix software/apps for multi-specialty remote consultation for chronic care, Net4Hemo software/apps for patient community and remote consultation for bleeding disorders, and the Smart Scope, a hardware device that works with Net4Medix for early detection of abnormalities including cervical, oral, and colo-rectal cancer. “We want to see Periwinkle growing as a company that provides quality solutions for screening, diagnostics, and remote care," she adds.

Mint has a strategic partnership with Digital Empowerment Foundation, which hosts the Manthan and mBillionth awards.

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