R O S H N I rendition 1.0 | november sixth, two thousand eleven

written by ao [ with feedback from dv ]

BUILD AWARENESS. SEEK OUT KNOWLEDGE. STRENGTHEN COMMUNITY. ENCOURAGE UNDERSTANDING. FIGHT TB WITH LIGHT.

I administer TB vaccines to about sixty patients during an average week. -And what does this look like? It's a bit overwhelming on Mondays, Wednesdays and Fridays—although Mondays are the slowest. I give drugs from early morning until mid-afternoon. It's a constant flow of patients, about thirty per day. -But all you have to do is give them the drugs, right? Why is it such a consuming process? Oh no, administering the vaccines is only one part of it. They typically ask questions for 15 to 20 minutes. Always so many questions. [Interview with DOT provider, Pratiksha (Malvani Health Post). Date: October 6th]

Jyoti is 20-years-old. She lives in the slums of the Malvani. She was one of the patients who did not show up that day for treatment. We went to visit her home. "This girl went through 6 months of treatment. She stuck closely to the regiment. Never fell off. After 6 months, she still tested positive. This devastated her. We did not hear back until a few weeks ago. She fell ill once again." We walked on stepping stones to her place because the area was flooded. Her feet were infected from the unsanitary sitting water. This prevented her from travelling to the nearby DOTS center for her vaccines. "Do you know anyone else with TB in your area?" "No." 15 minutes later, we visited a TB patient living less than 100 yards away. "Does anyone know you have TB?" "My mother." "Anyone else?" "No, not even my best friend knows." This story is all too common. (Malvani Slums, Date: October 19th)

ROSHNI Create a platform for tuberculosis patients to interact with each other and connect with the healthcare workers who serve them, ultimately involving community, government and private to take control of TB. THE INSPIRATION: the idea was initially inspired by my interactions with patients and healthcare workers in the Malvani slums of Mumbai over a one month long period. The concept of Roshni was expanded into its present form after I was introduced to Avaaj Otolo--a project led by Neil Patel of the Stanford University HCI Group. Avaaj Otolo is an interactive voice application first piloted for small-scale farmers in Gujarat. The aim of Avaaj Otolo is to encourage the sharing of knowledge and innovation amongst farmers. Applying a similar interactive voice application for an online community to serve TB patients is unexplored territory (to the best of my knowledge). THE PURPOSE: The ultimate aim of Roshni is to lower default rates for TB treatment. There are many reasons for patient defaults. However, two frequent contributing causes are (1) lack of awareness & understanding of the treatment process (2) stigmas in the community hinder open communication and discussion. My hypothesis is that Roshni will build awareness, allow patients to seek out knowledge, strengthen community, encourage understanding, and thus contribute towards lowering default rates.

PILOT STUDY: Run 6 month pilot of Roshni in the Malvani slums of Mumbai with government TB patients. Participant Goal: 60 TB patients. 20 experts (doctors/healthcare workers/medical students etc.) Potential Collaborators/Funders: Leading Organization: DMF Healthcare: RNTCP, Hinduja Hospital, KEM Hospital Technical Support: Medic Mobile, awaaz.de Other: J-PAL Labs, UNICEF, IDEO, Navnirman Samaj Vikas Kendra Mobile Phone Providers Timeline: Begin prototyping immediately. Aim for early December 2011 soft launch.

VOICE-BASED PLATFORM DESIGN: "Design in beauty, build in truth." The truths to build upon: Benefits for patients: -Allows patients to feel a part of a community, awareness of others going through a similar struggle. -Creates an open counselling space in which patients can seek guidance. -Lifts the stigma. Allows them to freely discuss TB without fear of humiliation or being outcasted. The forum is anonymous. -Educates patients on TB in a unique way. Traditional educational methods for TB include: short informational tutorials at the beginning of the treatment period, posters placed around the hospital and DOT center, door to door visits. Although each method is effective in its own way, Roshni offers the opportunity for patients to additionally educate themselves on their own time over an extended period of several months. Benefits for healthcare workers: -Allows them to get an ear for what is happening on the ground. A chance for them to connect directly with patients and learn from their experiences & the questions they are asking. -Detect emerging trends (possibly even outbreaks). -Patients are able to openly express discontents with the system. This serves to inform changes and new solutions.. -Encourages collaboration between citizens and government to fight TB.

The Usability Design: The usability design takes after Avaaj Otolo. Patients navigate through a numerical form on their phone. They can be illiterate and still gain full access to Roshni content. MODULE COMPONENTS: Press 1) Questions & Answers Press 2) Education Press 3) Stories Press 4) Announcement Board 1) Questions & Answers: "You ask the questions. We'll answer them." Patients submit voice-based questions regarding TB & their health for experts to answer. I expect patients will guide the space towards where their needs are. This can range from technical health questions to general inquiries more on the side of seeking counselling. The "TB experts" can be located anywhere in India. We find these people, and ensure that they are properly screened and briefed on the process. I believe medical students will play a key role in this. Patients build confidence over time that the information provided is trustworthy and reliable. All questions are public (although patient information is kept private), and anyone is able to browse the questions and answers. If applicable: Patients receive an automated call back notification when their question gets answered. They can also sign up to questions they find interesting in order to receive notification when it is answered. 2) Education: an ongoing series of short 5-10 minute audio pieces by various healthcare administrators/doctors providing education around TB. Presented with natural speaking voices, tailored around local understanding and also entertaining. 3) Stories: Inspirational, honest, and informative stories from patient experiences. Examples: a story a patient tells after successfully completing treatment and testing negative for TB. A patient tells about what they learned after defaulting on treatment. 4) Announcement Board: General announcements. The "status update" of RNTCP activities. Examples: announcement of a new DOT center opened in the area. Open call for DOT provider volunteers. Modules can easily be added/removed depending on use & popularity. Additional ideas: Job Posting Board. Relevant job posting for TB patients, in positions where they won't be putting other individuals at risk of infection. Feedback Board. Patients can express discontents with the care they are receiving and/or recommend improvements.

The Physical Component: For many, this will be their first time participating in an online community of any sort. It is important to make the concept tangible and familiar. Visual Component: When organizations create with an illiterate population in mind, symbols play a key role in the proliferation of ideas and products. Consider the recurring symbols of Hinduism—the sacred Om symbol, the swastic, the image of Ganesh. Although in a very different context, mobile phone providers are another example; Vodaphone, Aircell, and Uninor are each are identified with a specific symbol, and can be found at every turn. These symbols play an essential role for navigating day to day life. The visual component of Roshni is important. With the initial introduction, patients are given a laminated sheet with symbols explaining the navigation of the community. It should not only be a guide for navigation, but also embody what Roshni represents: a community of people searching for knowledge and understanding. They should instantly feel a part of something special. Physical Engagement: Exploring how to connect Roshni back into the real world context and make it accessible. Possibly a monthly newsletter -- highlighting new content and updates (but how do you do this without using text?).

Main Concerns Moving Forward: -How do we incentivize doctors/healthcare workers to participate? Long-term engagement is key. I believe medical students will play a central role in this. -Who are the developers? How can the system be created where healthcare workers can easily update the system without needing programmers? This would include adding in new education/story modules. -Languages? Most know Hindi, but how to account for others? -How do we measure the impact? -Who manages project on the ground? -How do we fund it? A toll free line is essential. If patients had to pay for their own airtime, there would be minimal participation. In regards to financial sustainability: a group at MIT wrote a remarkable paper in 2008 entitled "Mobile Phones; A Study of Forms, SMS, and Voice". The paper provides a quantitative evaluation of data entry accuracy on mobile phones in a resource-poor setting. They applied their findings to a small TB pilot in Bihar around data collection in the field. They tested three different interfaces: forms, voice, and SMS. For the voice interface, the total cost per patient incurred by each user interface as part of a 6-month TB program was $4.59. This is a small sum compared to the total cost of approximately $90-$100 needed to treat a TB patient in India. My napkin calculations show that I would need about $500 to comfortably run the pilot for 6 months with 60 patients. One MDR-TB patient costs the government more than $500 a year.

THE WHOLE POINT At the beginning of this document, I told the story of a young woman named Jyoti, 20-years-old, living in Malvani slums. TB is constantly on her mind, but she can't always talk about it with her mother (the only person she can reach out). Jyoti sits down on her bed after dinner and connects into Roshni with her mobile. The last time she checked in was one week earlier. She listens into a few new question submissions. One question from another patient was particularly insightful for her. They asked about experiencing nausea in the first few weeks of treatment. She is going through something similar. There is one question that has yet to be answered. She is interested in knowing what the response will be. Jyoti subscribes to the question so she can be notified when it is answered. She goes back to the main navigation, and enters the Stories menu. She sees there is a new story she has yet to listen to. It's a young boy talking about his feelings after completing his treatment. This cheers her up a bit. Afterwards, she tells her mother she is going to the nearby water pump to fill up their bucket. She steps outside and calls into Roshni. She submits a question: "I recently completed the 6 months of treatment, and still tested positive. I'm just beginning treatment again, and I'm scared. What if I test positive again?" Two days later, Jyoti receives a call on her phone. It's a notification letting her know her question has been answered. A doctor in Delhi. It's a short, simple message. But this woman's reassuring voice & message gives her hope and confidence for the road ahead--- --and she's not the only one.