ICT to help fight TB
Bridging the health divide
An Online Patient Monitoring System in West Godavari (AP),India

Dr Jyoti Jaju
Consultant WHO
Revised National Tuberculosis Control Programme

"The world today is divided between those who have access to health services and those who do not. A similar divide affects the flow of information and communications."

1. Introduction 

Every year, approximately 2 million persons in India develop tuberculosis (TB), accounting for one fourth of the world's new TB cases

Tuberculosis (TB) is an infectious disease caused by a bacterium, Mycobacterium Tuberculosis. It spreads through air by a person suffering from TB. A single infectious patient can infect 10 or more people in a year.

It primarily affects people in their most productive years of life and is commonly associated with poverty, overcrowding, and malnutrition.

National TB Control Programme (NTCP) was launched in 1962 in India on a 50:50 sharing basis between Centre and State in regard to supply of anti-TB drugs. The objective of the Programme was to detect as many cases as possible and effectively treat them so as to render infectious cases as non-infectious. Since its inception, the programme is integrated with the primary health care infrastructure in the States.

Though the NTCP has been in operation since 1962, it had not made any significant epidemiological impact in controlling this scourge. The Programme was reviewed by an Expert Committee in 1992. Based on the findings and recommendations of the Review, the Government of India evolved the Revised National TB Control Programme (RNTCP) based on Directly Observed Treatment Short Course (DOTS) strategy with the objective of curing at least 85% of new sputum positive patients and detecting at least 70% of such patients.

2. DOTS strategy
This strategy has five components

• Political and administrative commitment. TB is the leading infectious cause of death among adults. It kills more women than all causes associated with childbirth combined and leaves more orphans than any other infectious disease. And, since TB can be cured and the epidemic reversed, it warrants the topmost priority, which it has been accorded by the Government of India. This priority must be continued and expanded at the state, district and local levels. 

• Good quality diagnosis. Top quality microscopy allows health workers to see the tubercle bacilli and is essential to identify the patients who need treatment the most. 

• Good quality drugs. An uninterrupted supply of good quality anti-TB drugs must be available. In the RNTCP, a box of medications for the entire treatment is earmarked for every patient registered, ensuring the availability of the full course of treatment to the patient the moment he is registered for treatment. Hence in DOTS, the treatment will never fail for lack of medicine. 

• The right treatment, given in the right way. The RNTCP uses the best anti-TB medications available. But unless treatment is made convenient for patients, it will fail. This is why the heart of the DOTS programme is "directly observed treatment" in which a health worker, or another trained person who is not a family member, watches as the patient swallows the anti-TB medicines in their presence. 

The programme is accountable for the outcome of every patient treated. The cure rate and other key indicators are monitored at every level of the health system, and if any area is not meeting expectations, supervisions are intensified. The RNTCP shifts the responsibility for cure from the patient to the health system.

Diagnosis of TB cases is made through quality sputum microscopy, by examining three sputum samples of the chest symptomatics over a 2-day period. Facilities for sputum microscopy are available free of cost at RNTCP microscopy centers.

If all three acid-fast bacilli (AFB) smears are negative, 1-2 weeks of broad-spectrum antibiotics are prescribed. If a patient with negative smears continued to have symptoms after 1--2 weeks of broad-spectrum antibiotics, a chest radiograph was taken, and if that is indicative of disease, the patient is treated for TB. 

The entire TB treatment is given three times weekly on alternate days; the diagnostic evaluation and the entire course of treatment is free of charge. During the first 2 months of treatment (intensive phase), patients are treated with isoniazid, rifampin, pyrazinamide, and ethambutol (streptomycin is added for retreatment patients, and ethambutol was omitted for smear-negative, non seriously ill patients); every dose is observed directly by either a health-care provider or a non family community member. For the remaining 4--6 months of treatment (continuation phase), either Isoniazid and Rifampin or Isonizaid, Rifampin, and Ethambutol are prepared into weekly packs, and at least the first dose each week is observed directly

Under the DOTS strategy, patients swallow the drugs under direct observations of the health worker viz. the DOT provider. The selection of the DOT provider is not restricted to medical personnel. Any responsible person of the locality /community except a family member can function as DOTS provider. The patient is required to visit the designated DOTS center and consume the medicine in the presence of the DOT provider. In case the patient drops out/fails to attend the health facility on the scheduled day, then it is the responsibility of the DOT provider to retrieve the patient to the system and ensure completion of the treatment regimen.

One of the unique features of this programme is the fact that patient wise treatment boxes are available with the DOT provider with the full regimen of drugs needed to complete the treatment. This facility ensures availability of anti-TB drugs for a patient for his/her full course of treatment on the very first day he/she is registered.

The RNTCP is implemented through TB Societies at the State and District levels. There is a State TB Officer and District TB Officer who are responsible for the effective implementation of the programme in the States and Districts respectively. The District TB Societies are headed by the District Collectors while the state level society is headed by the State Health Secretary. 

This revised strategy was initially pilot tested in 1993 in a population of 2.35 million and it showed remarkable success. The RNTCP was then extended to a population of 13.85 million to assess its operational feasibility.

RNTCP has been expanding rapidly. As on date, the coverage is more than 744 million in 414 district in 26 states and union territories. It is envisaged to cover 800 million population by the year 2004 and the entire country by 2005. 

Till date more than 1 million patients have been put on treatment under RNTCP averting nearly 200,000 deaths & preventing more than 2 million infections.

The Director-General of the World Health Organization has declared that, "The DOTS strategy represents the most important public health breakthrough of the decade, in terms of lives which will be saved."

The implementation of RNTCP has resulted in a net savings of more than $400 million in economic costs; effective nationwide implementation by 2005 would save more than $27 billion through 2020. Sustaining and expanding this program will require continued high-level commitment from the central and state governments of India, supplemented by continued and coordinated assistance from international and bilateral organizations. 

Progress toward TB control in India is critical to global TB control and has direct implications for TB elimination efforts in the world.

However the picture is not yet complete. Unless every patient who is identified and screened is tracked till his final treatment, the possibilities of the patients dropping out before their final cure always present a lurking danger. The false sense of satisfaction due to temporary relief coupled with economic factors and bureaucratic apathy is the identified cause. 

The statistics coming out currently is based on the aggregate data and does not provide the possibility of knowing what is happening to various individual cases. In order to address this, a Patient based Monitoring System has been designed and implemented in West Godavari district of Andhra Pradesh. The system uses the information and communications technology for achieving this objective. 

3. ICT to aid DOTS

3.1 System Methodology

Although the fight against TB has recently enjoyed high priority, the biggest obstacle towards a successful effort in fighting the disease remains an integrated and coordinated information structure to which all stakeholders has access.

Various government departments, NGOs, research institutions and private companies collect data regarding the disease in diverse fields. This information remains fragmented across the various domains, meaning that at any one time, planning, decision and policy making by any institution or stakeholder is done with only a fraction of the information available.

This situation is detrimental to the effectiveness and relevancy of the planning and decision making process. Coordinated information gathering and updating can be one of the most effective tools in fighting the pandemic.

Through consultation, a master database can be designed on an Oracle or SQL server platform or the like. The Master Database will be maintained and controlled from a single point. On a periodic basis, the responsible person at the client end will update the database using a simple front-end application and send it via the web to the Master Database, where it will automatically update that specific section.

All the Primary Health Centres that act as the basic delivery point for this programme have been computerized. Every PHC has a data entry operator who has been trained on this web based system. The PHC, microscopic centre and the treatment unit have their own logins and passwords enabling them to access and feed data. Although the PHCs currently access the website through a dial up network, plans are afoot to establish a district wide area network for better connections. 

The suspected cases that come to the PHCs are first recorded in the web based system and allow the possibility to be tracked till their microscopic examination is done at the MC unit. This would allow strengthening of the referral system from the PHCs to the microscopic unit and reduce the chances of the suspected cases and the investigation drop outs. This would help in establishing a two way feedback system.

The data pertaining to all the suspected cases is thus available on the website and the microscopic unit can then access them in its inbox and make required entries after the test is done.

Once the investigation details are entered on the site, the treatment unit can access the same and based on the results generate an auto treatment card, which then becomes the basic document at the PHC level for the subsequent follow up of the patient. The treatment card for individual patients can be periodically updated at the PHC level and would therefore eliminate the possibilities of false reporting.

The monitoring of patients on a real time basis would help in ensuring their progression towards complete cure. It would also allow generation of exception reports regarding

1. The cases that have not gone for microscopic examination despite being referred by the PHCs concerned.

2. The cases that are waiting to be categorized and for which the treatment card has still not been opened despite the completion of the microscopic study.

3. Those cases that are not taking medicines regularly and have not gone in for sputum follow ups.

This would then help in narrowing down attention to such cases and enable corrective measures.

The quarterly reports instead of being based on some field data would come directly from the online reports. This would also allow perfect reconciliation of the drug inventory as it would be flowing directly from the system.

The system would have an advantage of allowing concurrent evaluation of the patients and would not throw surprises at the end of every quarter. The exception list can also be generated and seen at every level allowing corrective measures to be taken. These lists can also be passed on to every level for generating pointed action.

This system would be able to make a paradigm shift in the method of programme review. It would have an effect of bringing into public domain the information that is currently shrouded and available in medical records. The whole patient information when available in public space would induce cross verification and strengthen our claims regarding the achievements of this programme.

3.2 System development

The system and database have been developed to be as user-friendly and automated as possible. The development has followed five phases detailed as below:

• Database design: The development, testing and implementation of the database design.

• Web application development: The web user interface being user-friendly and intuitive. The user interface is a front-end application requiring little PC and no database skills.

• Graphic user interface: This interface allows users to do spatial analysis on the data, create thematic maps, run spatial queries and do general view, query and print operations.

• Existing data integration: The data acquired from all stake-holders is being integrated into the database. This applies to statistical, attribute and spatial data.

• Testing of the system: Finally the system has been tested in an operational environment. 

3.3 System implementation and capacity building

This stage refers to the actual implementation of the system and can be divided into 3 phases

• The development and implementation of the system rollout: Visit all identified stakeholder (PHCs) sites, install equipment and networks (where necessary)

• Training and skill transfer: Training of staff in the use of the Web User Interface, training of selected stakeholder staff in the use of the interface with regard to view, query and print operations.

• Technical operations: Assigning of usernames, passwords and ensuring linkages between the relevant entities. As the system is implemented at each site, each stakeholder agency will come online. Thus the network will grow with each installation.

3.4 System maintenance

In order to make the system sustainable over the long run, system and database maintenance and updating is of utmost importance. The following issues are important during maintenance.

• The Master Database is to be hosted and maintained at one central point.

• Technical maintenance at sites will be the responsibility of specialized team provided by the relevant agency or trained locally.

• Problems, whether technical or administrative, can be logged on-line and responded to.

• The system is self-maintainable since updates are done on specified periods.

• Data redundancy and cyclical errors will be dealt with automatically.

• Since the system will be in daily use, quality assurance will be a matter of course, with system errors being responded to immediately.

4. Barriers to the programme
However there are a numbers of barriers that need to be addressed viz. telephone lines are very unreliable and too expensive for many rural clinics to afford, internet connectivity is not reliable due to prohibitive costs, poor net work infrastructure and unstable electricity delivery, lack of trained human resources to handle information communication technologies among primary health care providers etc. On top of this, are the attitude and the resistance to change amongst the health functionaries. The staff used to passive reviews loathes such active decision support and management review system and therefore need lot of cajoling, convincing and threat to adapt to the new system. However a clear commitment on part of the project leaders can achieve desired result in real quick time.

5. Result
The result would, therefore, be data about different aspects of TB flowing from various PHCs to one central database. All participating centres will have access to the Master Database and be able to extract information for decision making or planning. Information can be viewed, queried and printed within a statistical and spatial context. For example, the district TB centre might want to know which clinics in a province are in need of a certain drug. They will then be able to access the Master Database and by doing simple queries on a front-end application, would ascertain which PHC need which drugs and how much of it. Similarly TB statistics will be updated constantly. 

This system being fairly simple in design offers immense possibilities of upscaling. The basic prerequisite is for the PHC to enter the data by accessing the website either by having a computer themselves or at some nearby Internet kiosk.

All the periodic reports at the district level would now be a click away.

6. Conclusion
Information on TB is fragmented on various forms. The implementation of a National TB Information Management system will enable us to fight the pandemic from a united front, which is essential for success. It will enable various institutions covering various domains to act in unison and with purpose and will enable target specific, accurate and affective location based service delivery to the people on the ground suffering from TB as well as people affected indirectly, such as orphans.

The main criteria for success should be the difference that it makes in the quality of life of people directly or indirectly affected by this pandemic. This system has the potential to deliver that.