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ROSHNIrendition 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?Its a bit overwhelming on Mondays, Wednesdays and Fridays—although Mondays arethe slowest. I give drugs from early morning until mid-afternoon. Its a constant flow ofpatients, about thirty per day.-But all you have to do is give them the drugs, right? Why is it such a consumingprocess?Oh no, administering the vaccines is only one part of it. They typically ask questions for15 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 patientswho 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. Neverfell off. After 6 months, she still tested positive. This devastated her. We did not hearback until a few weeks ago. She fell ill once again."We walked on stepping stones to her place because the area was flooded. Her feetwere infected from the unsanitary sitting water. This prevented her from travelling to thenearby DOTS center for her vaccines."Do you know anyone else with TB in your area?" "No." 15 minutes later, we visited aTB patient living less than 100 yards away. "Does anyone know you have TB?" "Mymother." "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 andconnect 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 andhealthcare workers in the Malvani slums of Mumbai over a one month long period. Theconcept of Roshni was expanded into its present form after I was introduced to AvaajOtolo--a project led by Neil Patel of the Stanford University HCI Group. Avaaj Otolo isan interactive voice application first piloted for small-scale farmers in Gujarat. The aimof Avaaj Otolo is to encourage the sharing of knowledge and innovation amongstfarmers.Applying a similar interactive voice application for an online community to serve TBpatients 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 causesare (1) lack of awareness & understanding of the treatment process (2) stigmas in thecommunity hinder open communication and discussion.My hypothesis is that Roshni will build awareness, allow patients to seek outknowledge, strengthen community, encourage understanding, and thus contributetowards lowering default rates.
PILOT STUDY:Run 6 month pilot of Roshni in the Malvani slums of Mumbai with government TBpatients.Participant Goal: 60 TB patients. 20 experts (doctors/healthcare workers/medicalstudents etc.)Potential Collaborators/Funders:Leading Organization: DMFHealthcare: RNTCP, Hinduja Hospital, KEM HospitalTechnical Support: Medic Mobile, awaaz.deOther: J-PAL Labs, UNICEF, IDEO, Navnirman Samaj Vikas KendraMobile Phone ProvidersTimeline: 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 asimilar 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 beingoutcasted. The forum is anonymous.-Educates patients on TB in a unique way. Traditional educational methods for TBinclude: short informational tutorials at the beginning of the treatment period, postersplaced around the hospital and DOT center, door to door visits. Although each methodis effective in its own way, Roshni offers the opportunity for patients to additionallyeducate 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 toconnect directly with patients and learn from their experiences & the questions they areasking.-Detect emerging trends (possibly even outbreaks).-Patients are able to openly express discontents with the system. This serves to informchanges 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 formon their phone. They can be illiterate and still gain full access to Roshni content.MODULE COMPONENTS:Press 1) Questions & AnswersPress 2) EducationPress 3) StoriesPress 4) Announcement Board1) Questions & Answers: "You ask the questions. Well answer them." Patients submitvoice-based questions regarding TB & their health for experts to answer. I expectpatients will guide the space towards where their needs are. This can range fromtechnical 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 ensurethat they are properly screened and briefed on the process. I believe medical studentswill play a key role in this. Patients build confidence over time that the informationprovided is trustworthy and reliable. All questions are public (although patientinformation is kept private), and anyone is able to browse the questions and answers.If applicable: Patients receive an automated call back notification when their questiongets answered. They can also sign up to questions they find interesting in order toreceive notification when it is answered.2) Education: an ongoing series of short 5-10 minute audio pieces by varioushealthcare administrators/doctors providing education around TB. Presented withnatural 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 testingnegative for TB. A patient tells about what they learned after defaulting on treatment.4) Announcement Board: General announcements. The "status update" of RNTCPactivities. Examples: announcement of a new DOT center opened in the area. Open callfor 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 wontbe putting other individuals at risk of infection. Feedback Board. Patients can expressdiscontents 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. Itis 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 recurringsymbols 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 canbe found at every turn. These symbols play an essential role for navigating day to daylife.The visual component of Roshni is important. With the initial introduction, patients aregiven a laminated sheet with symbols explaining the navigation of the community. Itshould not only be a guide for navigation, but also embody what Roshni represents: acommunity of people searching for knowledge and understanding. They should instantlyfeel a part of something special.Physical Engagement: Exploring how to connect Roshni back into the real world contextand make it accessible. Possibly a monthly newsletter -- highlighting new content andupdates (but how do you do this without using text?).
Main Concerns Moving Forward:-How do we incentivize doctors/healthcare workers to participate? Long-termengagement 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 workerscan easily update the system without needing programmers? This would include addingin 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 ownairtime, there would be minimal participation.In regards to financial sustainability: a group at MIT wrote a remarkable paper in 2008entitled "Mobile Phones; A Study of Forms, SMS, and Voice". The paper provides aquantitative evaluation of data entry accuracy on mobile phones in a resource-poorsetting. They applied their findings to a small TB pilot in Bihar around data collection inthe 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 partof a 6-month TB program was $4.59. This is a small sum compared to the total cost ofapproximately $90-$100 needed to treat a TB patient in India. My napkin calculationsshow that I would need about $500 to comfortably run the pilot for 6 months with 60patients. One MDR-TB patient costs the government more than $500 a year.
THE WHOLE POINTAt 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 cant alwaystalk 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. Thelast time she checked in was one week earlier. She listens into a few new questionsubmissions. One question from another patient was particularly insightful for her. Theyasked about experiencing nausea in the first few weeks of treatment. She is goingthrough something similar. There is one question that has yet to be answered. She isinterested in knowing what the response will be. Jyoti subscribes to the question so shecan be notified when it is answered.She goes back to the main navigation, and enters the Stories menu. She sees there is anew story she has yet to listen to. Its a young boy talking about his feelings aftercompleting his treatment. This cheers her up a bit.Afterwards, she tells her mother she is going to the nearby water pump to fill up theirbucket. She steps outside and calls into Roshni. She submits a question: "I recentlycompleted the 6 months of treatment, and still tested positive. Im just beginningtreatment again, and Im scared. What if I test positive again?"Two days later, Jyoti receives a call on her phone. Its a notification letting her know herquestion has been answered. A doctor in Delhi. Its a short, simple message. But thiswomans reassuring voice & message gives her hope and confidence for the roadahead-----and shes not the only one.