Governance Knowledge Centre Promoted by Department of Administrative Reforms and nsions, http://indiagovernance.gov.in/ Researched and Documented by www.oneworld.net.in owsa@oneworld.net
Promoted by Department of Administrative Reforms and Table of Contents Executive Summary... 2 Background... 3 Objective... 4 Working Design... 5 Methodology... 7 Key Stakeholders... 7 Lessons Learned... 8 References... 9 Appendix A Interview Questionnaire... 10 1
Promoted by Department of Administrative Reforms and In India today, two deaths occur every three minutes from tuberculosis (TB). But these deaths can be prevented. With proper care and treatment, TB patients can be cured and the battle against TB can be won - Ministry of and Family Welfare, India Executive Summary Tuberculosis (TB) is one of the leading causes of mortality in India and accounts for one-fifth of the global TB cases. In India, every year, 2 million new TB cases occur and 0.87 million are infectious cases. Reports reveal 330,000 million people die of TB each year in India. It is prevalent in poor communities, along with HIV/AIDS and Malaria. TB has also been fuelled by HIV/TB co-infection. Due to a high incidence of TB cases in India, the government implemented the WHOvia the RNTCP 2 recommended DOTS 1 (Directly observed treatment short-course) strategy (Revised National Tuberculosis Control Programme) in 1997. RNTCP is an addition to the DOTS strategy and is currently in second phase covering 633 districts. It offers free treatment and medicines at various health centres and government hospitals. Despite national level initiatives, the threat continues to rise due to irregularity in medicine dosage, ineffective monitoring mechanisms and lack of awareness of TB amongst patients and community. TB reporting is low because patients fear being discriminatedd against. Another problem of TB is Multi Drug Resistant (MDR) which occurs when patient stops taking drugs during treatment or don t take drugs correctly. In that case, prescribed medicine becomes 1 DOTS strategy has five components and is one of the most effective strategies available for controlling TB: a) There must be a political commitment to control TB. b) TB cases are to be detected by sputum smear microscopy examination among symptomatic patients. c) Patients are to be given anti- TB drugs under the direct observation of the health care provider/community DOT provider. d) Regular, uninterrupted supply of anti-tb drugs must be provided and lastly e) Systematicrecording and reporting system to be implemented to assess treatment results of each and every patient and of whole TB control programme. 2 RNTCP aims to: a) achieve and maintain at least 85% cure rate amongst New Smear Positive (NSP) pulmonary TB cases. b) achieve and maintain at least 70% detection of such cases. 2
Promoted by Department of Administrative Reforms and ineffective and develops drug resistance, thus unable to kill the germs, and creates further complications. TB can be cured only if patients strictly adherence to prescribed medication regimen for a period of six months. Poor, marginalised patients face inaccessi of basic TB information due to electricity shortage, poor healthcare infrastructures, and limited official doctors. To address this, ZMQ launched the programme in 24 th March 2009 on World Tuberculosis Day to provide patients relevant information about their dosage, treatment schedules, reminder and alerts thus tracking progress and monitoring treatment compliance via mobile technology. ZMQ's pioneering initiative is partnering with Delhi State TB Office - a nodal body of the NCR of Delhi for TB treatment. The program has been implemented in a private DOTS centre in rural Delhi. There are 573 DOTS centres in Delhi and ZMQ is trying to scale this for all the 573 DOTS centres. This "Technology for " Initiative of ZMQ promises to combat Tuberculosis through mobile phones by creating a) high-impact low-cost general mass awareness through mobile phone games; b) targeted m-training interventions for healthcare providers using Smart phones c) implementing Universal TB Management platform and d) connecting patients for Adherence & Compliance through mobile phones. Technology applied with the hope to create a social impact. Technology is time and cost effective and non-dependent on too many resources. Background The WHO recommended DOTS strategy is the most effective strategies to control TB. It emphasises the regular intake of TB drugs for a period of six to eight months and monitoring of patients treatment for progress assessment. In Delhi there are573 DOT centres which have major limitations. The data of the patient, treatment and medication are recorded in registers. The monthly reports are put on the blackboards. This creates an unnecessary challenge for the DOTS treatment because in today s scenario with the use of appropriate technology, the treatment can be made more effective if a component of technology is Figure 1: Receiving award from the Chief Minister of Delhi 3
Promoted by Department of Administrative Reforms and applied in it. Hence, ZMQ leveraged mobile technology under the programme to promote awareness amongst patients and connect them with health service providers for emergencies. Objective To bridge gap between DOTS strategy and on ground implementation, ZMQ conceived to act as a multi-dimensional mobile technology initiative to combat Tuberculosis. It has identified four levels oftechnology interventions to combat TB: Generates awareness: 1.4 million mobile phone games were downloaded to aware illiterate and marginalised patients on TB in local languages and free of cost. Provides Training: Smart phones with mobile training kits were given to DOTS healthcare providers (self-training modules) and community healthh workers. Centralising TB Management system (Patient tracking): All DOTS centres are connected to a central server and monitored with limited human supervision. An automated message generated from the server is sent to all patients reminding them to take medicines through a universal patient identification system that contains a database of patients of all DOT centres. Patient compliance reporting: After receiving the automatic SMS, Patients send their response regarding medicine consumption via mobile to the DOT centre/worker. This has helped in monitoring patients treatment and their compliance especially those living in the remote regions and isolated locations. This information is useful to know the total number of patients under treatment, to check drop outs if there are any and those who need more attention, such as MRD-TB. 4
Promoted by Department of Administrative Reforms and Working Design has been implemented in four Edutainment: Mobile Games and phases. Interactive Learning ZMQ and MDR-TB Partnership has Phase 1 - Developing Mobile Games for come up with an innovative approach to Awareness and Behaviour Change: create awareness on Tuberculosis among children through edutainment and 1.4 million game applications were downloaded games. The package Stop TB Carnival on TB on Reliance and other low cost mobiles in is a CD-Rom based campaign with games and interactive learning on local languages so that every person from rural Tuberculosis. The primary aim of the areas can make use of these games. These games project is to create TB awareness among are fun to play and are good medium of learning. youth and bring a change using interactive computer and mobile phone Phase 2 Training care providers through games. It has been evidenced that mobile applications: interactive games blended with socially relevant messages helps in effective, care providers, also known as DOT care quicker & easier understanding, better retention of information, and creates providers are given training via smart phones in awareness. The CD-Rom games are compliance with DOTS to learn about the disease being distributed to schools in and at an individual level. This is called self-training around Delhi in close collaboration with module. Whereas community training involves the Delhi State TB Office. Central TB Division, GOI, has validated the content training peer educators and other marginalised of the CD-Rom. Games include: groups about TB. Stop TB Learning zone: Four self Under Self training module, the smart phone explanatory simulated modules with interface explains three categories of TB patients- and relapse. voice-over and animations followed by test to check knowledge Sputum positive, sputum negative Stop TB Cricket: Interactive 20/20 Each category is self-explanatory giving details of cricket. Target is to win and chase germs treatment duration, kind of tests required and Stop TB Quiz:10 questions on TB to recommends medicine dosage. check knowledge Stop TB Mobile Cricket: Mobile The Community training module has four version of cricket game to be played anywhere components on its interface: Basic understanding, Transmission and Risks, Precaution and Prevention; and Treatment and Cure. All instructions are provided with iconic messaging features, making it convenient illiterate persons to understand in English as well as Hindi. Source: http://www.freedomtb.org/awareness.html 5
Promoted by Department of Administrative Reforms and Phase 3 - Creating a Centralised Patient Management System: All the DOT centres are connected through a centralised system containing a database of registered patients. It helps to track attendance, drop-outs (reasons for drop-outs) their shift from one centre to another, update on latest treatment and medicines and adhere to the specific needs of patients. Automated messages are sent from the central server to every patient to take medicines on time and allow patients to send a response. A complete monitoring of TB treatment has been made possible by this initiative. Phase 4 - Integrating a Mobile Tracking and Treatment System: The mobile tracking system connects patients with the DOT centres and providing them alerts SMS on medicine dosage and patients reply either through SMS, video or voice. This process acts as a reminder to patients and keeps them under surveillance, as prescribed by DOTS strategy. 6
Promoted by Department of Administrative Reforms and Methodology The Governance Knowledge Centre (GKC) research team selected Freedom TB on the basis of its unique, financially and socially sustainable business model. For documentation, the team interacted with the project director to learn more about the projects details, objective, and achievements. Key Stakeholders ZMQ Software Systems is a Technology for Development Social Enterprise and is the project owner. The enterprise develops innovative ICT solutions, software, and applications for empowering people and enabling sustainable development. would not have been successfully launched without the collaborative support of the following partnerships: Government: Delhi State TB Office acts as a TB knowledge partner that verifies the knowledge ZMQ provides. At the same time, it gives ZMQ access to number of healthh centres (DOTS Centres) to implement the programme. Education Department: Gave access to 1200 schools with 650,000 students s where school based mobile games were provided on TB. 7
Promoted by Department of Administrative Reforms and NGOs: 40 NGOs are providedd technology based tools, which they disseminate in their communities and beneficiaries. At the same time, the front-line health workers of NGOs are instructed to visit door to door in the community and train people how to use the mobile based solution. (CASP PLAN, ORDS etc). Mobile Operators: Leading mobile Operators like Reliance Mobile gives ZMQ a channel to distribute games and content to communities either free or at a very low price. IT and Mobile Tech Companies: Microsoft and Qualcomm (BREW) provide technology support tools. Microsoft supports the technology component in the initiative and has given ZMQ the hope to scale it further. Pharma Company: Eli Lilly & MDRTB are support partners for the initiative. Finally Asoka Changemakers for bringing together Microsoft and ZMQ to make a difference to millions of lives towards better life. Lessons Learned initiative promises to cure TB patients with effective monitoring practices and brings awareness of the illness to the rest of the community through game applications, quizzes, and other self-training methods. By integrating m-technology, awareness of TB treatment and combating the disease has become possible. It has benefited both patients and communities in several ways. It is structured to use technology at all aspects of combating Tuberculosis and its management. The following features make the initiative nteresting and effective: 1. Unique methodology: It employs a unique methodology of creating self-monitoring, observation and adherence system; thus significantly reducing the burden of human resource and associated management issues. 2. Centralised monitoring system to track patients: Owing to the centralised monitoring of all DOT centres, the performance of each centre and their services are tracked. All patients information is recorded in a universal patient identification system and they are updated on latest medicines, treatment, alerts on medicines etc. The solution helps in significant reduction of drop-out rates of patients, especially migrant population. 3. Ensures patient compliance reporting: has sensitised every patient that the only way to recover is regular intake of medicines and reporting their treatment to the DOT centre on a day-to-day basis so that specific remedies can be undertake for each patient. Regular reporting ensures speedy recovery of TB patients. 8
Promoted by Department of Administrative Reforms and 4. Facilitates management training: The DOTS care providers are now in a better position to teach others on TB due to the training modules on their smart phones. They are easy to learn and at the same time easy to teach, especially the illiterate section of the society as the components are available in the form of iconic messages and in local languages. 5. Streamlines connectivity: It employs two-way connectivity between the DOT centre and the patient, and vice-versa through the course of the treatment through mobile phones. 6. Interactive learning: ZMQ with the support of Microsoft designed mobile games and edutainment on TB for quick and effective learning; and longer retention of information, especially among semi-literate communities and children. Research was carried out by (OWFI), Governance Knowledge Centre (GKC) team. Documentation was created by Research Associate, Attrika Hazarika For further information, please contact Naimur Rahman, Director, OWFI, at owsa@oneworld.net References ZMQ Software systems http:/ //www.freedomtb.org/ Asoka Changemakers http://www.changemakers.com/empower-patient/entries/freedomtb Tuberculosis Control India http://www.tbcindia.org/rntcp.asp World Organisation (Country office for India) http://www.whoindia.org/en/ /section3/section123.htm 9
Promoted by Department of Administrative Reforms and Appendix A Interview Questionnaire Stakeholders and roles Scope 1. According to our research, the major stakeholders in the project are ZMQ, Microsoft, Qualcomm, Mobile operators, Government, DOT centres, and NGOs.To our knowledge: a. ZMQ is the owner and the manager of the project b. Microsoft Research and Qualcomm has designed the game applications and training modules on mobile phones c. Government supplies free medicines d. Mobile Operators have provided the handsets e. DOT centres are housing the patients f. NGO partners have provided front-line health staff to visit patients g. Education Department has disseminated TB information in schools h. Pharma Company has provided TB drugs Can you expand on this list of providers and elaborate on each of their roles? 2. How many DOT centres are covered under this system? 3. What is the total number of patients monitored under this system? 4. Has there been a reduction in the number of TB patients since 2009 under this project? If yes, could you please provide us data? 5. What type of alerts is sent to the patients and how frequently are these alerts sent? 6. What is the level of response among patients to medicine dosage reminders? Working Design 7. According to our research, there are 4 major programme features: a. high-impact low-cost general mass awareness through mobile phone games; b. targeted m-training interventions for healthcare providers using Smart phones i. What is the impact of self-training and community training on DOT health workers via smartphones? Is there any difference of role between self-trained and community trained workers? 1. How many self-trained workers are employed? 2. How many community-trained workers are employed? 3. Are there plans to integrate new technologies to measure impact and pursue effective monitoring of the project? 4. Are the iconic messages both in Hindi and English? 10
Promoted by Department of Administrative Reforms and c. implementing Universal TB Management platform i. Can you explain how the DOT centres are monitored under the centralised TB management system/ universal patient identification system? 1. How are those who are in denial and do not register in DOT centres identified? 2. There is a reduction of drop-outs by 6..85%. How are drop out patients monitored? d. How does the project motivate drop out patients to get treatment? connecting patients for Adherence & Compliance through mobile phones i. How are the mobile phones used in detecting absence of medicine usage amongst TB patients? Explain this use of technology. Impact and Sustaina 8. How is the project funded? Do you think this is sustainable? If so, why/how? a) Can you provide us with a breakdown of costs according to the following? i. Technology ii. Smartphones iii. DOT health workers iv. Other expenses 9. The project was launched in 2009 and according to our research, it has partnered with the TB office in Delhi. a) To what extent has it been scaled up? b) What is the strategy for further promotion of awareness/upscaling of the project? 10. The project has the following achievements: a) Increase in number of patients enrolled b) Increase in success rate of treatment; c) Decrease in patient drop-out rate; d) Increased in intake of medicine; e) Reduction in the cost of travel to hospitals for treatment How has the project achieved the following and by what margin? Please provide us data. 11. In what other ways has this project been successful? What is particularly unique about this model of addressing TB? 11