e-Health Rwanda Case Study July 1, 2008 Hamish Frasier Maria A. May Rohit Wanchoo

1

Table of Contents

Executive Summary............................................................................................................ 2 Introduction – Country Overview and Demographics...................................................... 10 Public Health Informatics ................................................................................................. 14 Interoperability.................................................................................................................. 17 Access to Information ....................................................................................................... 20 eHealth Capacity Building................................................................................................ 23 Electronic Health Records ................................................................................................ 26 Mobile eHealth.................................................................................................................. 28 Unlocking the Market for eHealth .................................................................................... 29 National eHealth Policies.................................................................................................. 31 Conclusion ........................................................................................................................ 32

2

Executive Summary Health information technology in Rwanda is a quickly growing industry with many committed stakeholders, including the Government of Rwanda (GoR), several non-governmental organizations (NGOs), and private sector partners. Particularly in the areas of electronic health records and national reporting system, Rwanda has been a pioneer in national initiatives to integrate technology into its expanding health care system. Where the private market has not emerged, the GoR has provided significant support to help these fledging industries. As a result, GoR is significantly involved in all major initiatives and emerging technologies. There are six significant entities in health information technology in Rwanda to date. These programs are:

• OpenMRS – An open-source Medical Records System that tracks patient-level data

• TracPlus and TRACnet – Monthly monitoring of infectious diseases including HIV/AIDS, TB, and Malaria

• CAMERWA – Drug and medical supply management system

• Telemedicine – Information and communication technology (ICT) used to deliver health and healthcare services, information and education to geographically separate parties

• Health Management Information Systems (HMIS) – systems that integrate data collection processing, reporting, and use of the information for programmatic decision-making

• E-Learning – use of ICT in instruction of A2-level nurses for promotion to A1 status.

In addition to GoR, Partners in Health and Voxiva, Inc. have played significant roles in leadership and implementation of HIT in Electronic Health Records and in inventory management and pharmacy, respectively. The telemedicine, HMIS, and e-learning programs are in nascent stages, but initial discussions or plans for their implementation have already begun, often as collaborations between GoR, academic institutions and NGOs. These programs will be discussed in additional detail in the following sections: Introduction. The introduction will give a brief description of the demographics, politics, economic growth, and current governance of the country. Rwanda’s history is essential for contextualizing the government’s priorities and attitude, as well as existing infrastructural strengths and weaknesses that affect ease of implementing HIT. Medical Overview. This section will provide a general overview of the current medical state of Rwanda, including human capacity statistics and health-related indicators. This section will also describe the various Government, Non-Governmental, and Private actors

3

participating in the health and health-related spaces in Rwanda to illustrate the nature of relationships and organic collaborations. Programs. TRACnet, OpenMRS, National Health Information System

Public Health Informatics. This section will describe GoR initiatives to evaluate population health, monitor health trends, and create a responsive surveillance system. In particular this section will describe the TRACnet program, and the building of the National Health Information System.

Electronic Health Records. This section will describe OpenMRS (Open Medical Records System), which is used by Partners in Health and Columbia University’s Millennium Village Project (MVP) and has been endorsed by GoR for national rollout.

Mobile e-Health. This section will explore how mobile technology is used to improve health delivery in Rwanda. Most of the work to date has focused on gathering clinic level information on infectious diseases through mobile phones using Voxiva’s TRACnet software.

Interoperability. This section will describe the degree to which the various programs (e.g. TRACnet, OpenMRS, and National Health Information System) integrate and/or can communicate with one another. Our initial findings are that the programs have been developed in isolation from one another, and there is little current interoperability to date. Some initiatives are now in place to create such links.

Capacity. e-Learning,

Access to Information. This section will describe the ability of patients, providers and researchers to readily access accurate healthcare information. Patients have almost no ability to access health information, while providers have varying levels of ability. Partners-in-Health sites have the ability to access patient level information through their electronic medical record (EMR) system, OpenMRS. Other clinics have access to the history of the self-reported aggregated clinic level information as maintained by TRACnet. e-Health Capacity Building. This section will describe the efforts underway to (a) use technology to train health providers in standard practice, and (b) to train medical providers in the various e-Health initiatives. Though to date, few formal training programs have existed, a program to provide a rigorous 18-month practical program to nurses will be launched later this year.

Sectoral Responses.

National e-Health Policies. This section will describe the Government’s role in supporting or creating the initiatives in e-Health to date. It will also suggest policies that will be required for future success in e-Health. The initiatives that are receiving the most

4

attention from GoR are the electronic medical records initiative (EMR), the TRACnet program, and, HMIS, e-Learning. The Government has preliminary plans for work in the overhaul of the Health Management Information System (HMIS).

Unlocking the Market for e-Health. This section will describe the private sector’s role in supporting or creating the initiatives in e-Health to date. To date, the largest private sector partner is Voxiva, through the TRACnet development. Private sector partners, including MTN, Rwanda-Tel, and alfasoft, are helping to migrate the HMIS from an Access database to a SQL server.

Conclusion This section will reiterate the current state of health information technology in Rwanda and evaluate obstacles and remaining challenges. The government’s role as the main driver in HIT provides an opportunity to streamline efforts, though as yet there has been little activity in the private sector. Continued economic growth and investment in health systems may open new doors for the use of technology. Profiles OpenMRS. The most widely used patient-management system in Rwanda, this open-source medical record system has been endorsed by the government for national rollout. TRACnet. The government collects monthly data from facilities providing ART to HIV patients. This section describes the program, its use of mobile technology in collecting data, and the partnerships involved in developing the system.

Introduction – Country Overview and Demographics

Overview

Rwanda is a country of approximately 9.5 million inhabitants and an annual population growth rate of 2.8%.1 The country is just over 26,000 square kilometers (about the size of Maryland) and has the highest population density in Africa2. The country is one of the poorest in the world, with a GDP per capita of approximately $202 ($1,600 adjusted for purchasing power parity [PPP]), and nominal GDP is $2 billion ($13.7. billion adjusted for PPP). 3

Rwanda’s poverty is also reflected in its social indicators. The country ranks 161 out of 177 countries on the United Nations Human Development Index4 Sixty percent of the population lives under $1 per day, sixty-six percent is under the age of twenty years, and 83% is rural dwelling. 5 Most rural Rwandans are smallholder subsistence farmers, producing bananas, maize, beans, and sweet potatoes as staple crops; droughts are common and can greatly affect crops, as irrigation systems are limited. There are two main ethnic groups in Rwanda. Hutus are the largest group and compose 84% of the population. The Tutsis are the second group and compose 15% of the population. The remaining Rwandans are Twa.6

Government

Rwanda was colonized by Belgium in 1916 and remained under its rule until 1962. In the years before Rwanda’s independence , the Party of Hutu Emancipation Movement came to power and thousands of Tutsis fled to neighboring countries. In 1973, under the leadership of Maj. Gen. Juvenal Habyarimana, the military took control of the country and abolished all political activity. In 1990, after several rounds of single party elections, Tutsi exiles formed the Rwandan Patriotic Front and invaded from Uganda7. While a ceasefire was negotiated in 1992, the tension of the ethnic divide culminated in the

1 EIU Rwanda report, May 2008 2 https://www.cia.gov/library/publications/the-world-factbook/geos/rw.html 3 Economist Intelligence Unit (2006) Rwanda: Country Profile 2006 4 UN Human Development Report Database accessed on June 13, 2008 (http://hdrstats.undp.org/countries/country_fact_sheets/cty_fs_RWA.html) 5 Food and Agriculture Organization (2006) The State of Food Insecurity in the World 2006: Eradicating World Hunger -- Taking Stock Ten Years After the World Food Summit. 6 CIA. Rwanda. The World Factbook 2008 [Available from: https://www.cia.gov/library/publications/the-world-factbook/geos/rw.html] 7 United States Department of State (2008), Background Note: Rwanda,

http://www.state.gov/r/pa/ei/bgn/2861.htm

11

genocide of 1994 after Habyarimana’s plane was shot down. It is estimated that 800,000 Rwandans were killed and millions fled to neighboring countries.8

Current Government

Since the genocide, GoR has made remarkable steps to bring the country together. Under the leadership of President Paul Kagame, who in 2003 became the first democratically elected President, Rwanda has become safer, and had more economic development than any period since the country’s independence in 1962.9 Addressing the harms caused by the genocide, including the need for reconciliation within society, care for victims and orphans, rendering justice and promoting equality are also high priorities of the government.

Governance indicators suggest vast improvement in Rwanda since 1996. According to the World Bank report, Governance Matters 2007, the most significant improvements have been made in the categories of Political Stability, Government Effectiveness, Rule of Law, and Control of Corruption. Moreover, the Government of Rwanda’s “Effectiveness” is now ranked amongst the highest in sub-Saharan Africa and even above other large countries including Kenya and Uganda.10 On “Control of Corruption”, Rwanda ranks behind only Botswana and South Africa.

Economy

By 1996, the vast majority of Rwandans who had previously fled the country—Hutus and Tutsis alike—had resettled in Rwanda. The economy has since recovered rapidly; from 1995 to 2003, Rwanda was sub-Saharan Africa’s second fastest-growing economy. Since then, growth has been equally startling: the Gross Domestic Product (GDP) per capita grew 76% from 2002 to 2007. 11 Services accounts for over 53% of GDP. Agriculture accounts for roughly 30%, and industry/manufacturing provides the balance. The largest exports are coffee, cassiterite, tin, and coltan, a metallic ore. Inbound Foreign Direct Investment (FDI) has expanded from USD 3 million in 2003 to USD 8 million in 2005.12 Official Development Assistance (ODA) has increased in

8 Rwanda: how the genocide happened. April 1, 2004. BBC News. http://news.bbc.co.uk/2/hi/africa/1288230.stm 9 IMF World Economic Outlook Database, April 2008 http://www.imf.org/external/pubs/ft/weo/2008/01/weodata/index.aspx 10 http://info.worldbank.org/governance/wgi2007/mc_chart.asp, accessed on June 12, 2008 11 Rwanda EIU Report, March 2008 12 OECD, African Economic Outlook 2007, Table 10

12

dramatically, from USD 321 million to 576 million, since 2003 as the Government has proven its capacity for governance and efficacy.13 Health and Health Care Overview

Epidemiology

The health of Rwanda’s population reflects its high levels of poverty and still developing health care infrastructure. National statistics look similar to many other countries in the region. Infant mortality currently is approximately 85 deaths per 1,000 lives births.14 Forty-five percent of children under the age of five meet height-for-age criteria for chronic malnutrition.15 HIV/AIDS prevalence reached 3% in 2005 and was considered a generalized epidemic.16 Malaria is the leading cause of morbidity and mortality for both adults and children in Rwanda. Health System

As of the end of 2005, Rwanda had about 366 health centers, 33 district hospitals, and 5 referral hospitals.17 Rwanda’s health system includes public, private and traditional health systems, which are supported by GoR, non-governmental organizations (NGOs) and civil society. Mutuelles de santé (mutual health insurance), a community-based health insurance program, was launched by the GorR in 2006. Subscribers pay approximately USD 2 a year, with GoR and Global Fund covering the enrollment fee for the poor. Over 83% of the population has enrolled in the program. Evaluation of the program is preliminary but data from the past two years suggests that utilization rates of health services increases with enrollment. 18 Some have commented that the current structure leaves the mutuelle (community organization) with financial liability and involves burdensome administrative work. As the Mutuelles approach universal coverage, some issues diminish as the consequences of adverse selection become less pronounced. Technical Overview

Government Leadership and Participation

GoR participates in HIT initiatives in diverse ways. The major bodies that lead and promote HIT are:

13 OECD, African Economic Outlook 2007, Table 11 14 ORC Macro. Rwanda Demographic and Health Survey 2005. July 2006. 15 Ibid. 16 Ibid. 17 Rwanda Human Resources Assessment for HIV/AIDS Services Scale-Up (2005). Please see appendix for a more detailed explanation of each type of facility. 18 Community-based Health Insurance in Rwanda: from Case Studies to National Policy.

13

Ministry of Health. The Ministry of Health is the major Government body responsible for all health related activities. In particular, the Center for Treatment and Research on HIV/AIDS, Malaria, Tuberculosis, and other epidemics (TRACPlus) has been a promoter and user of e-health products, including TRACnet, a system that will be described in detail in the Public Health Informatics section below. Ministry of Science, Technology, and Scientific Research. The Ministry of Science, Technology and Scientific Research sits within the President’s Office and oversees the

Information Communications Technology (ICT) Unit. The ICT Unit has direct influence over the development of and the expansion of internet connectivity and therefore has the most direct influence over e-Health initiatives. It oversees the ICT initiatives taking place in other Ministries and Government related-bodies including the Rwanda Information Technology Authority, which is described below.19 Rwanda Information Technology Authority (RITA). RITA is housed in the President’s Office that oversees science, technology and scientific research. Its charge is to design policies for technology used by GoR and create an IT governance framework and standards for various ICT strategies. To accomplish these goals, RITA provides ICT support both in terms of training and consultancy services. It also is the body that is responsible for standard setting and compatibility in ICT applications throughout the public sector, and for facilitating the private sector in the development of ICT in Rwanda. Current State of Connectivity

GoR is known to be one of the governments most committed to ICT development in sub-Saharan Africa. That having been said, a lot of ICT work remains for e-Health to take off. Indeed, against all countries in Sub-Saharan Africa, Rwanda had fewer telephone subscribers, fewer internet users, and fewer personal computers (per 100 people). 20 Rwanda’s connectivity fate is partially explained by the fact that it is not connected to the international fiber-optic backbone. This implies that Rwanda’s broadband efforts are all through satellite. Despite this limitation, there has been some initial success in telemedicine, which will be described below.

19 http://www.mininfra.gov.rw/docs/cadre_organique_du_MININFRA.pdf 20 World Bank, Rwanda ICT at a Glance, accessed at devdata.worldbank.org/ict/rwa_ict.pdf on June 10, 2008

14

Public Health Informatics Introduction

There are two major programs attempting to document and track HIV/AIDS information in Rwanda. The first, Open Medical Record System (OpenMRS), tracks patient-level data for clinics.* The second, TRACnet, is a software package used by TracPlus though which clinics report aggregate data on a monthly or biweekly basis into a repository managed by the Central Government. Additionally, GoR has plans for an online blood bank monitoring program. Overview of Programs:

TRACnet. Please refer to the accompanying profile of TRACnet. Health MIS

The TRACnet program informs a broader Health Management Information System (HMIS). Implemented by the MoH in 1997, HMIS has historically been largely paper based at the health center levels, with a combination of paper and electronic reporting at the district and central level. The broad goals of the information system are to “integrate data collection, processing, reporting, and use of the information necessary for improving health service effectiveness and efficiency through better management at all levels of health services”21 GoR is currently overhauling the HMIS to make it better-designed to “assist in the management and planning of health programmes, as opposed to the delivery of care.”22 A comprehensive HMIS will aggregate patient-level data into clinic and district level information to enable it to inform drug and medical supplies procurement, disease surveillance, and programmatic funding. Current Status of Programs

The Current Management Information System (Système d’Informations Sanitaires, SIS) is managed on a Microsoft Access database, separate from TRACnet, and has important limitations. Most significantly, it is not designed to easily pass information/data from one program area to another or pass it from one system to another. This results in limited data entries, duplication, loss of critical information, higher costs, and missed opportunities for timely intervention and prevention.23

* For more information on the OpenMRS section, please refer to the section on Electronic Health Records. 21 WHO, Developing Health Management Information Systems: A Practical Guide for

Developing Countries, p3 22 ibid, p3 23 United States Agency for International Development, Rwanda HMIS Assessment

Report, p23-26; interview with Dr. Richard Gakuba

15

Secondly, reports are currently not submitted from the district level to the central MoH. A USAID Assessment Team in April 2006 found that as of the end of April only 37% of health centers and 34.3% of hospitals have submitted their SIS Monthly reports for March 2006.24 As noted above, there is also insufficient capacity at the MoH to aggregate, analyze, or report national level SIS data. Weekly epidemiological reports also ceased to exist when the Epidemiological Unit at the MoH closed in January 2006. A National Health Information System Project is currently in the planning phase, which will enhance the country’s ability to perform disease surveillance and enhance public health protection services. The first part of this transition is the migration of data to a Structured Query Language (SQL)-based relational database server by the end of summer. Such a migration should make room for a more sophisticated electronic system to support HMIS efforts. Planned Interventions

The National Health Information System Project will also include a revamping of indicators so that nursing staff enters data for only one set of forms, which then electronically inform the relevant databases. According to the GoR, by the end of 2008 these systems should be coordinated. It intends to create a system that provides the following capacity:

Service providers will be able to utilize the same data for the same cases, without having to duplicate their collection work. Authorized service providers will be able to share clinical information among themselves, about a patient. Public health issues and communicable diseases will be quickly identified and managed to mitigate risk to the general public. A health surveillance system will provide information on risk factors, treatment, health service utilization and outcomes to assist in the development and evaluation of policies and programs aimed at the prevention and control of infectious and communicable diseases. Aggregated data will be easily accessed by the Ministry of Health for reports on statistics and trends to support health planning and decision making.25

A simultaneous scale-up in the number of data managers is also planned. Currently, the head of nursing completes most forms among their other duties. A data manager at each hospital will not only ease the burden on the nursing staff, but will allow for faster transitions between systems. Government of Rwanda estimates the costs for this human resource expansion at USD 100,000 per month. In anticipation of the national roll out, the International Development Research Centre (IDRC) is funding a formal training program to be set up by PIH and the GoR for Java programming and medical information systems with a focus on OpenMRS. The training will create a cadre of Rwandan workers

24 ibid, p9 25 Government of Rwanda, Ministry of Health, National E-Health Strategic Plan 2007-

2011

16

who possess high level IT expertise to implement and extend OpenMRS in Rwanda. The first students are expected to start training in fall of 2008.

Blood bank

The blood bank initiative would serve essentially the same function as TRACnet for the blood supply. This would allow central agencies to monitor the blood supply by type of blood and region. At the central level, the project is still in its design phases, but at the local level, three health centers are linking their blood inventories together. These activities have no been followed by GoR and results of their efforts could not be located.

Conclusion

There are two major interventions currently underway in Rwanda that pertain to Public Health Informatics. The first is the use of TRACnet, and the second is the overhaul of the Health Management Information System. TRACnet currently interoperates with a drug procurement system (Camerwa), which is in the midst of a significant overhaul, but not with other MIS-related systems (e.g., medical records, surveillance, and laboratory tests). Although the drug procurement system provides critical support of the health care system, the government's limited ability to hold facilities accountable for their distribution of drugs reduces its effectiveness. Increasing integration of information systems and strengthening collection of patient-level data would increase the accuracy and resolution of the database; and could work in tandem with other efforts to reduce redundancy in forms and costs.

17

Interoperability

Introduction:

This section will focus on interoperability – the ability of the various Rwandan e-Health systems to communicate with one another. The major programs in Rwanda that interoperability applies to are: Open Medical Record System, a patient-level system used in some clinics; TRACnet, the national aggregate facility-level reporting system for HIV treatment; Camerwa, a surveillance program; and the Health Management Information System (HMIS) broadly.. TRACnet interoperates with Camerwa, which is currently undergoing a significant overhaul, and serves as a proxy for a health surveillance system However, the current form of the HMIS is not integrated with TRACnet, Camerwa, or OpenMRS. Another program that needs to interoperate with clinical level systems is the Access database used in come facilities to support the Mutuelles insurance program. These programs are described in greater detail below. Background on the Various Systems:

OpenMRS. Please see accompanying profile. OpenMRS is currently being extended to interoperate with a variety of district and national reporting systems. Rwandan programmers trained by PIH have created a module that allows data from OpenMRS to be automatically submitted to TRACnet. The system shows the data to be submitted for the monthly report to the user, and then, with the click of a button, submits the information via the Internet or by mobile phone with guidance from an automated voice response to TRACnet. In addition, data can now be exported from OpenMRS in a WHO-supported format called IXF. This format can then used by district reporting systems and there is agreement to incorporate it in TracNET. TRACnet. Please see the accompanying profile on TRACnet for more information. GoR is currently modifying the TRACnet system to accept IXF. A public-private partnership between Voxiva, PEPFAR, Motorola, MTN, Accenture and GSM are in the planning process of integrating the existing systems using Tracnet technology. GOR has approved the project and they have secured a planning grant from the Gates foundation. Camerwa. Camerwa is a semi-independent non-profit organization administered by the GoR which manages the country’s drug inventory. TRACnet aggregates clinic-level information on the number of HIV and TB patients seen in a given period. Camerwa uses this information to manage the HIV/AIDS drug and medical supply purchases for the country. Camerwa is also used to procure and distribute all other essential drugs and medical consumables.

18

Health Management Information System (HMIS). Currently in implementation stages, the broad goals of the HMIS are to “integrate data collection, processing, reporting, and use of the information necessary for improving health service effectiveness and efficiency through better management at all levels of health services.26” The management information system will “assist in the management and planning of health programmes, as opposed to delivery of care.” A full Management Information System would aggregate patient-level data into clinic- and district-level information. This would inform drug and medical supplies procurement, disease surveillance, programmatic funding, etc. Rwanda Mutuelles. The Mutuelles program is a community-based health insurance program coordinated by GoR. It currently utilizes a Microsoft Access database to store information about patient health utilization for payment purposes in a central repository. Linking the system with a patient management system, such as OpenMRS, would enable GoR to evaluate how the insurance scheme improved health and identify remaining challenges. Additionally, this linkage would also help improve the efficiency of clinics. Additional improvements are intended to be made in the Mutuelles interface as well. Currently, clinics complete paper forms that are submitted for data entry at the central level. While providers and patients have no electronic record of transactions, Mututelles has created a database for their clients and plans to launch it in the fall of 2008. GoR, as part of its broader movement towards electronic records, is trying to integrate ICT with its insurance programs. Integration and Interoperability

Although there is progress on many e-Health fronts, one of the most important gaps has been the integration of various systems (OpenMRS, TRACnet, Mutuelles, and HMIS) to consolidate information. Currently, the various data are entered separately and exist in virtual silos. Nurses are required to fill out different and mutually exclusive forms, exacerbating strains on a system facing a scarcity of health professionals. GoR plans to overhaul the HMIS. The system-level improvement is expected to resolve many of these issues, but much more work is necessary for successful integration. The Government has recently endorsed a roll-out of OpenMRS to all hospitals in Rwanda (it is currently only in use at all PIH and MVP sites). The OpenMRS program would then feed into the TRACnet system. That would also have the benefit of maintaining and improving the data in the Camerwa drug procurement program. Drug procurement appears to be functioning well at a national level, but integration with patient- and clinic-level information should allow faster access from the drugs to the clinics and more accountability around their distribution. Moreover, the HMIS system will have the capacity to gather data regularly for improved surveillance.

26 World Health Organisation, Developing Health Management Information Systems: A Practical Guide for Developing Countries.

19

GoR has two goals in attempting to overhaul the HMIS system and improve interoperability. First, it believes that interoperability should create a large reduction in the paperwork and administrative time spent by nurses. Nurses are the backbone of the health delivery system, and the current time they spend reporting to multiple sources is widely considered burdensome. A well functioning system will draw information out of patient-level records automatically, allowing nurses to spend more time with patients. Second, an integrated system can provide higher quality data as it is based on collection at the patient level. GoR has also implemented performance-based financing at the district level and collects a set of clinical and managerial performance metrics that influence staff salary levels. Currently, it uses dedicated software to evaluate performance. Increased collection of clinical and operational data would allow GoR to identify drivers of performance, refine its incentive structure, and improve quality within and across sites. There is little information on migration patterns of patients, but most information seems to be communicated in English and/or French. Language translation did not surface as a major issue during interviews. Conclusion

There is limited interoperability between the various e-Health systems currently used in Rwanda - OpenMRS, TRACnet, Camerwa, a surveillance program, the Mutuelles insurance program and the HMIS broadly. TRACnet is integrated with Camerwa, and serves as a proxy for a health surveillance system. However, the current form of the HMIS is not integrated with TRACnet, Camerwa, or OpenMRS. A planned HMIS overhaul is intended to fix many of these issues, but an absence of funding has curbed efforts in this arena. Ideally, GoR would like the HMIS to be universally interoperable with current systems and require interoperability with HMIS as a criterion for future systems and modules.

20

Access to Information

Introduction

This section will describe the ability of medical providers, government officials and researchers to access necessary information in a timely manner. Many of the focus of Rwandan e-Health initiatives have been on increasing health system quality per se, and have not yet focused on either provider or patient uptake of these services. Moreover, limitations to information access are due in part to the lack of Rwanda’s connectivity to fiber optic. Information access will likely follow general connectivity access. Access by subpopulation

Medical Providers. Anecdotal evidence suggests that doctors are universally computer literate but poor electricity supply and slow-at-best Internet connectivity limit the amount that doctors can rely on ICT for clinical help. At the time of this writing, government officials estimated that just over half of the district hospitals have Internet access, and all of the research hospitals have internet access. These access figures may be misleading however, as computers are likely to be set up in “management” offices and clinicians and nurses may have limited-at-best access to this equipment. Currently, even simple “Google” searches are not regularly used because of slow connections and/or lack of regular access. Some providers use professional list-serves to communicate with each other, but again these appear to be of limited value in time-sensitive matters. GoR plans to have established LAN connectivity in all district-level facilities by 2010. Clinics managed by Partners in Health (PIH) or Columbia University’s “Millennium Villages” Project (MVP) can individually access patient-level records using OpenMRS software27. At present, health facilities and hospitals managed by other groups are not using the OpenMRS software.* For a more detailed discussion on OpenMRS, please see the Section titled, “Electronic Medical Records”. The King Faisal hospital is also implementing health information systems. PIH recently developed modules to be used with OpenMRS to assist the providers. One is the “patient dashboard,” which provides key information on a patient to the provider in an easy-to-understand format. Particularly for patients that have coming to the facility for some time, navigating through paper charts can be challenging. Health facilities. Health center information (at the clinic level) is available to respective district hospitals through the TRACnet program, which is the software used by the

27 Currently available at six out of the seven sites managed by PIH * For more information on OpenMRS, please refer to the section titled “Electronic Medical Records.”

21

Government of Rwanda to collect and store clinic-level HIV/AIDS information at the central level. These hospitals receive a copy of their own clinic’s statistics and data for health centers in their jurisdiction. The aggregated nature of the data also makes it impossible for physicians to discern the quality of their performance relative to others’. Though reporting rates for TRACnet are consistently high and data is collected at frequent intervals, little research has been conducted verifying the accuracy of the information collected. PIH has begun to collect clinical indicators across sites to compare outcomes and distributes them among the sites. It also reviews longitudinal data aggregated from all the sites to evaluate the programmatic performance over time. Their installation of OpenMRS also allows them to create alert lists; that is, lists of patients that have low CD4 counts or other important markers and are not on ARV treatment. Such patients can then be sought out and treated. In addition, OpenMRS has enabled PIH to better understand its quality of care not only clinically, but also programmatically. Recently they have begun to explore different measures of quality, such as how long after a patient gets diagnosed with HIV they their first appointment, and the percentage of patients missing follow-up appointments. Government and researchers have access to information from the TRACnet application. Additionally both groups have information provided by the Health Management Information System (HMIS), but this data is very limited and can be out of date. The planned HMIS overhaul may reduce duplicative data entry, and improve the quality and frequency of the reported data. Patients. Adult literacy rates are approximately at 65%, presenting an upper bound for the medical literacy in the country and suggesting a need to communicate through non-written media. 28 According to first-hand accounts, radio has been used for this purpose, but GoR has largely centered its efforts in other areas. Planned Programs

Government of Rwanda has other initiatives in the planning stages as well, including setting up and an electronic laboratory that will allow clinicians to access a patient’s lab test history electronically and to determine whether a patient’s lab test have already been ordered by another physician. No date has been set for when this system will be piloted. The GoR sanctioned plan to roll out the OpenMRS EMR system will provide better access to patient data in clinics. This should help to support monitoring of patient care and outcomes as well as better reporting.

Conclusion

28 World Bank EdStats April 2008

22

Access to information at the clinic and national level exists though with little granularity. In some clinics, the implementation of electronic medical record systems enables clinicians to access comprehensive patient data efficiently. The use of the EMR by physicians is unclear. Little effort has been made to distribute information on HIV to the general population, and the literacy rate indicates that in order to penetrate effectively, visual or auditory media (including TV and radio spots) will be necessary. While researchers are given access to high-level data, the lack of intra-clinical data collection limits its research potential, particularly around quality of care.

23

E-Health Capacity Building Introduction

This section will describe the telemedicine and e-Learning efforts in Rwanda. This report will define telemedicine as “the use of communications and information technology to deliver health and healthcare services, information and education, where the participants are geographically separated."29 In resource-poor environments, telemedicine can help mitigate the absence of specialist doctors by connecting other health providers with specialists located elsewhere, or be used to train future doctors in rural areas. In general, telemedicine “facilitates clinical consultation, continuing professional education, health promotion, and healthcare management.” Current State of Telemedicine

There are two major telemedicine efforts already under way. The first of these efforts is to connect district hospitals to referral hospitals to store and forward asynchronous telemedicine; most immediately, teleradiology. X-rays taken in one facility, for example, the referral hospital, can be sent to anotherr facility, such as a district hospital, to be read by a radiologist. Importantly, computed radiography machines for this effort are already installed in two clinics and the procurement process for an additional two machines has already begun, with funding from the World Bank. The second effort is to create a universal platform for biomedical imaging using the Digital Imaging and Communications in Medicine (DiCom) platform in Rwanda. These efforts are being facilitated through the World Bank. As of the end of May, the tender phase of the formal Request for Proposal had been completed. Current State of e-Learning

Although a formal e-Learning program has yet to begin in Rwanda, there have been isolated instances of e-Learning being used in limited settings. In the university setting, many medically relevant lectures have been broadcast over a local area network that connects all three referral hospitals. Moreover, there have been telecasts of open-heart surgeries and various meetings. These efforts and others along the same vein are instrumental in increasing learning in health practices. GoR is also attempting to start a formal program in e-Learning for nurses. Rwanda, along with many other countries, suffers from a shortage of A1-nurses, or nurses who have completed secondary school and have two additional years of nurse training. A2 nurses, who make up the bulk of the health work force, have two years of secondary education and two years of nursing education. The e-Learning program is currently focused on additional training for A2 nurses to graduate to A1 level. The training

29 Government of Rwanda, Ministry of Health, National E-Health Strategic Plan 2007-

2011.

24

program will be funded by the International Development Research Centre (IDRC) and will use web-based training and exams. In its first stage, the program hopes to take 10 nurses through a one-year, practical curriculum. The program is slated to start in late 2008. Telemedicine in Rwanda will be primarily provided through the use of communications technologies alongside dedicated telemedicine software and diagnostic medical equipments. The GoR hopes to connect the telemedicine efforts and the Electronic Health Records (EHR). For example, in the case of diagnostic imaging, GoR envisions the transmission of live echocardiogram and ultrasound images for interpretation, along with store-and-forward transfer of digital images for review and assessment. Although there are health programs that use ICT, there are no formal training programs in

e-Health technology per se. There are informal training programs that take place in specific systems (e.g., TRACnet training), but there are few programs that focus exclusively on capacity building. The International Development Research Centre (IDRC) have now funded a formal training program to be set up by PIH and the GoR for Java programming and medical information systems with a focus on OpenMRS. This will create the high level IT capacity to implement and extend OpenMRS in Rwanda. The first students are expected to start training in fall of 2008. Kigali Health Institute (KHI) – the major teaching hospital in Rwanda – has been teaching basic computing skills as part of its nurse training. These training programs are fairly new, so only new graduates are likely to have acquired these skills. Planned Activities

Government of Rwanda Goal for e-Learning

By 2009, GoR plans to for all 30 district hospitals will have Internet access, to improve capacity for Telemedicine.30 As part of infrastructure for e-health, VPNs will be set up in order to allow high bandwidth interconnectivity. Its plan for rolling out this activity also involves procuring new equipment and coordinating the implementation efforts. King Faisal Hospital will be the Telemedicine Hub, and all hospitals will have a functional telemedicine platform installed by 2011. Conclusion

There are two initiatives to raise the capacity of health workers in Rwanda. The first is telemedicine, and the second is e-Learning. Telemedicine efforts have been growing at the ground level, and the central government would like to build upon these efforts. GoR is also attempting to develop an e-Learning program that would facilitate nurse training and hopes to leverage its e-Health initiatives to build capacity broadly within its medical professionals. Currently, capacity building in e-Health initiatives occurs primarily at an

30 http://allafrica.com/stories/200712310855.html

25

application-specific level; that is to say that users are trained in TRACnet, OpenMRS, HMIS separately. The IDRC have now funded a formal training program to be set up by PIH and the GoR for Java programming and medical information systems with a focus on OpenMRS. This will create the high level IT capacity to implement and extend OpenMRS in Rwanda. The first students are expected to start training in fall of 2008.

26

Electronic Medical Records Electronic Medical Records (EMR) in Rwanda – Overview

Electronic Medical Records allow clinics to collect, track, and analyze patient level data over time and potentially across health facilities. There are currently two primary systems in use - Open Medical Record System (OpenMRS), and Fuchia – which are detailed below. OpenMRS. Please see accompanying profile. Fuchia

Fuchia is a partially free software tool, originally developed by Medicines Sans Frontieres (MSF) and Epicentre, based on Delphi and Microsoft Access. The product is partially free because the software to run it is free and distributed by MSF, but in order to use it, you must have Microsoft Access, which in turn requires Microsoft Windows – both of which incur cost. The installation of Fuchia at the TRAC clinic allows collection of intake and follow-up data for HIV patients, but all changes to the code have to be made by the original developers so the forms are fixed in the system and cannot be edited Currently, the TRAC Clinic in Kigali has an installation of Fuchia with approximately 6,000 patients registered. However, TRAC slowly suspended usage of the system in 2007, due to lack of data accuracy and insufficient reporting and clinical tools. It was discovered that the paper registers contained more accurate and up-to-date information on the same set of patients. Fuchia is also used by LUX Development at two locations – Rwamagana Hospital and Kimironko Health Center. Currently, it is estimated that the Fuchia database used by LUX contains data for 3,000 patients. The installation of Fuchia at the TRAC clinic allows collection of intake and follow-up data for HIV patients, but the forms are fixed in the system and cannot be edited. The system also can produce printed patient summaries for clinicians and has a few built-in reporting forms for monitoring enrollment over time and some other high-level indicators. The system is not web-based nor is it built enterprise-style, so each computer utilized for data collection requires its own program installation and generates a separate database.

Other EMR systems

Some sites are using homemade tools to generate a database of patient-level data, often built in Microsoft Excel or Microsoft Access. It is likely that Excel and Access are used often because they are widely available, moderately priced and well known. While these

27

forms provide clinics with basic information, these programs systems are hard to use for the complex, longitudinal, and multi-domain information that clinics hope to include, and often lack the security features necessary to protect patient confidentiality. They also do not readily facilitate data analysis from a quality or programmatic perspective and rarely streamline reporting except for relatively simple data. Access has however been used in many countries very successfully for smaller projects. The number of such systems and their capabilities is difficult to estimate and no formal research has been conducted by GoR. Plans for EMR scale up In 2006, a letter from Dr. Innocent Nyaruhirira, the Minister of HIV/AIDS at the time, indicated that the Rwandan government had selected OpenMRS as the system that would be used universally across Rwanda for patient-level collection and monitoring. Since then, the government has been working to secure funds and expertise for such a venture, and is beginning deployment at the TRAC Clinic–the main research clinic in the country– in central Kigali. In anticipation of the national roll out, the International Development Research Centre (IDRC) is funding a formal training program to be set up by PIH and the GoR for Java programming and medical information systems with a focus on OpenMRS. This will create the high level IT capacity to implement and extend OpenMRS in Rwanda. An initial round of students trained in the spring of 2008, and the first round of funded students are expected to start training in fall of 2008.

Conclusion TRAC has implemented a fairly robust aggregate-level data collection infrastructure for HIV services in Rwanda. Though TRACnet’s ability to allow its users access high quality patient-level data are limited, TRAC now can watch HIV trends over time. Patient-level data gives clinics and the government a much more granular view of trends and activity, and the government’s recent endorsement of OpenMRS demonstrates their desire to increase the quality of data collected in clinics nationwide. While OpenMRS provides many useful features and flexibility for clinics to customize the software to their needs, in its current state it requires a considerable level of technical expertise to be installed and maintained so that it can be utilized in multiple sites with many users. Basic implementations of OpenMRS on one Windows server for specific tasks requires a lot less support but requires all interactions with clinic staff to mediated by paper forms and reports. Creating efficient communication between TRACnet and OpenMRS will be essential for maximizing the value of both systems. In addition, creative thought about how to ensure quality of data collection and efficiency in entry will be important components of the rollout’s success.

28

Mobile eHealth

While mobile technology holds great potential for health care in Rwanda, at present, there is still little use of phones in Rwanda. Only 3% of the population had a mobile phone in 2006, though over 75% of the population lives in an area with cell phone coverage.31 It is worth noting that in 2000, only 0.5% of the population had a mobile phone, so the per capita phone rate grew seven-fold over, which may indicate that mobile phones will soon become more commonplace in Rwanda. TRACnet

TRACnet has been able to utilize mobile phones as a tool for data submission quite successfully; virtually all facilities providing ART to HIV patients submit monthly reports using mobile phones. This process is outlined in detail in the accompanying profile on TRACnet. OpenMRS

The Millennium Villages Project (MVP) has creating a program that allows community health works to enter the vital statistics of patients into the medical record system (OpenMRS) using a mobile phone. MVP is currently piloting the program in its site in Uganda and plans to roll it out in Rwanda in late 2008. Conclusion

Mobile phone usage in health thus far has been limited thus far but may be an untapped resource. In Rwanda, where internet connectivity is extremely limited, mobile phones have served as a tool in aggregating facility-level data, in the case of TRACnet, and will soon be used to enter patient-level data in the MVP sites.

31 World Bank, Rwanda ICT at a Glance. devdata.worldbank.org/ict/rwa_ict.pdf

29

Unlocking the Market for eHealth The private sector has played a partnering role in Rwanda’s eHealth initiatives. The main coordinators of efforts appear to be the Ministry of Heath and the Rwanda Information Technology Authority, which then support ongoing private sector efforts. A foreign private player, Voxiva, Inc. has been awarded USAID funding contracts for the development of TRACnet, a system to track aggregate (clinic-level) information for monitoring purposes.32 MTN Rwanda – the largest local cellular provider – has also donated airtime for this monitoring effort. Background

Voxiva is the largest player in the e-Health space to date. GoR offers a tax holiday for private companies investing in e-Health and it is remains one of the best countries in Sub-Saharan Africa for setting up a business and enforcing contracts. However, Rwanda is average for the region in terms of dealing with licenses and registering property. According to the World Bank, the country requires substantial work in access to credit markets, protecting investors, trading across borders, and closing a business. Related to these indicators is the small size of Rwanda. As a country of approximately nine million people, any country-specific “market opportunity” would be small relative to other countries.33 Telecommunications has had mixed results in Rwanda. In late 2007, the GoR privatized its national telephone company and sold its 80% stake in Rwanda-Tel to Lap Green Networks, a Libyan Company.34 MTN Rwanda – the local branch of cellular provider MTN Group (a multi-national company), has had large success however. In the e-Health sector particularly, the anecdotal evidence is mixed as well. The private sector is involved in installing the information system, and a private local company is designing the new HMIS database.35 However, the opportunities that would have been the most promising for the private sector are financed through public monies. Voxiva’s TRACnet was financed through USAID/PEPFAR and better fits the description of a public-private partnership than a pure private sector opportunity. At the time of this writing, the Rwanda Information Technology Authority (RITA) is unaware of other efforts to include the private sector per se.36

32 TRACnet is referenced in detail in the accompanying profile. 33 See appendixes for World Bank Doing Business ranking and summary of Doing

Business Profile for Rwanda. 34 http://allafrica.com/stories/200710280052.html 35 The HMIS database is described in detail in the Public Health Informatics section. 36 Interview with Mr. Patrick Nyirishema

30

Future possibilities GoR has committed to a national rollout of OpenMRS. The implementation and management of the system will require significant training and sustained investment. In anticipation of the national roll out, the IDRC are funding a formal training program to be set up by Partners in Health and the GoR for Java programming and medical information systems with a focus on OpenMRS. The training will create a cadre of Rwandan workers who possess high level IT expertise to implement and extend OpenMRS in Rwanda. Once trained, these individuals will possess valuable programming skills that could enable them to create private companies specializing in OpenMRS management, or apply their skills to other pieces of health information technology. Conclusion

The private sector has participated in some of the largest e-Health efforts in Rwanda (TRACnet, HMIS overhaul). These efforts have largely been at the request of the main player in the domain – GoR. Private innovation in this space has been somewhat limited due to small potential returns. The country’s small size, and large amounts of poverty create a difficult environment to create profits. Private efforts in the space are likely to be dominated by private-public partnerships, or multilateral/bilateral government financing (e.g., PEPFAR, USAID).

31

National e-Health Policies

Government of Rwanda (GoR) has made explicit, proactive effort in promoting both e-Health and Information and Communication Technology (ICT). The e-Health initiatives in large measure, began in 2007, and have multiple parts. In particular, GoR has organized around the following efforts:

• OpenMRS – An open-source medical record system that tracks patient-level data

• TracPlus and TRACnet – Monthly monitoring of infectious diseases including HIV/AIDS, TB, and Malaria

• CAMERWA – A drug and medical supply management system

• Telemedicine – ICT used to deliver health and healthcare services, information and education to geographically separate parties

• Health Management Information Systems – systems that integrate data collection processing, reporting, and use of the information for programmatic decision-making

• E-Learning – use of ICT in instruction of A2-level nurses for promotion to A1 status.

What is most striking about the evolution of the country’s e-Health program is the type of role that GoR plays. Rather than the simply regulating other participant’s efforts, GoR acts as an active facilitator – it fundraises for new initiatives, it is active in program design, and it assists with implementation. This focus on active participation has perhaps allowed GoR to focus on programmatic policy (i.e., policies on which programs to implement), rather than regulatory or standard setting policies. Indeed, even the national e-Health documents do not bear the “policy” name, but rather are described as “strategic plans.” The success of many of the e-Health initiatives will be on the back of increased Internet connectivity. Although the Government has promoted ICT, in an absolute sense a lot more work remains to be done. In particular, ICT indicators are still quite low for Sub-Sahara African countries (as of 2006). Only 3% of the population has a mobile phone, compared to 13% for the region.37

Healthcare providers suggest that the two largest programs are TRACnet, a national data aggregation system focused on ARV therapy enrollment and outcomes, and OpenMRS, an open source medical record system implemented in several sites that the government is planning to roll out nationally.38 The decision facing GoR at the moment is how best to use OpenMRS as the primary data collection mechanism for TRACnet. OpenMRS can provide richer data for TRAC to analyze and to use to inform programmatic decisions,

37 World Bank, ICT at a Glance. 38 See accompanying profiles on OpenMRS and TRACnet for more information.

32

but is logistically and technically much more demanding. GoR has in principle suggested that OpenMRS should inform the TRACnet program which can then be used for drug and supply management (through Camerwa). GoR has created an internal publication outlining its goals and activities through 2011. Additionally, the GoR will need to work to develop appropriate patient confidentiality policies, as there appear to be none in place. Other government initiatives, such as creating universal standards for patient forms, have great potential to streamline care, in this case by reducing the number of forms that nurses are required to fill out on a regular basis allowing them to focus on their clinical duties. These measures and others will go a long way in creating a more efficient e-Health system. The Government is clearly aware of these needs, and is making inroads into creating a coordinated set of systems.

Conclusion GoR’s efforts in e-Health have been mostly strategic and programmatic rather than regulatory. That is to say that the GoR has a vision of which segments ought to be built up in the industry and partners with organizations that can effectively create the vision. Because the GoR is so active in the promotion of ICT and e-Health, its support acts as de

facto policy making. That having been said, some initiatives, such as medical records systems, are becoming increasingly complicated and require both support and regulation. To manage the growing systems, GoR will need to develop appropriate patient confidentiality policies and universal standards for user forms.

33

Conclusion

The implementation of health information technology faces great challenges in Rwanda. In the wake of a societal tragedy and in the midst of the realities of poverty and disease, GoR has many competing priorities and limited resources. Its embrace of information technology, particularly in the health sector and HIV/AIDS treatment, and willingness to partner with organizations like Partners in Health, the Clinton Foundation and the Millenium Villages Project has been pivotal to creating the current landscape. While many systems, such as TRACnet and OpenMRS, exhibit great shortcomings, they also demonstrate commitment to an HIT infrastructure and a chance to evaluate systems en

vivo to integrate into future systems and improvements in current ones. Rwanda’s HIT can simultaneously help it leapfrog into a relatively advanced health care system, but will also be limited by the same factors that limit the health care system: lack of electricity, lack of good roads, and limited trained health professionals. At this time, the government has created a virtual monopsony for health information technology. Because a great deal of international aid is channeled through the government and its partners, they control the incentives that exist for innovation and implementation within Rwanda. Whether in the long run, this strategy is sustainable or optimal is debatable, but at the moment, the size of the domestic market and the poverty of the population may deter private investors. For now, the power they weld gives them the ability to create a unified and interoperable system that might not arise in free market. OpenMRS, TRACnet, Camerwa, and HMIS all represent necessary parts of managing a complex health system, but will require significant investment and restructuring to be truly optimal. The value that they can add to the system as a sum, in comparison to discrete systems that don't communicate, is profound. Currently, Rwanda lacks a surveillance system that can identify disease outbreaks and monitor health trends at a population level. TRACnet, because it receives information on virtually all ART patients, does provide a rough measure of HIV treatment and patterns in Rwanda. Unfortunately, it is difficult to validate the quality of the data collected from the facilities where there is no patient-level data maintained. OpenMRS, a patient management system currently used mainly by Partners in Health and the Millennium Village Project, may give TRACnet legs once it is rolled out nationally if it improves the quality of data collection and maintenance. Furthermore, to maximize the benefit of these systems, it will be necessary to expand their use beyond HIV/AIDS. However, designing systems like TracNET in an open fashion facilitates ease of modifications, allowing the system to be customized for Rwanda’s needs and allow interoperability. While work remains to be done, the Government has set an ambitious agenda. E-training programs for nurses and technical training for the OpenMRS rollout will begin later this year. They are designing a new Health Management Information System that will link the variety of other systems and have improved capacity. Mutuelles is exploring ways to create a database with more capacities that could potentially link with patient management information. With the economic growth trends in Rwanda, the health infrastructure should continue to strengthen, with new opportunities for mobile and

34

Internet-based health services increasing as these technologies spread through the population.

35

Bibliography

BBC News. Rwanda: how the genocide happened. April 1, 2004. http://news.bbc.co.uk/2/hi/africa/1288230.stm BBC News. Rwanda genocide “failure” berated. April 5, 2004. http://news.bbc.co.uk/2/hi/africa/3599493.stm Boned-Ombuena (2007), Development Assistance to Health Information Systems Strengthening, World Bank, Health, Nutrition and Population Unit. CIA. Rwanda. The World Factbook 2008 [Available from: https://www.cia.gov/library/publications/the-world-factbook/geos/rw.html] Economist Intelligence Unit (2006), Rwanda Country Report Economist Intelligence Unit (2008), Rwanda Country Report, May 2008 Food and Agriculture Organization (2006) The State of Food Insecurity in the World

2006: Eradicating World Hunger -- Taking Stock Ten Years After the World Food

Summit. Gahigana, Innocent, “Rwanda: Rwandatel Deal Sealed,” The New Times, October 26, 2007 Gahigana, Innocent, “Rwanda: All District Hospitals to Be Connected in 2008,” The New Times, December 31 2007 Government of Rwanda, Ministry of Infrastructure (2008), http://www.mininfra.gov.rw/page_en.php?subaction=showfull&id=1129416303&archive=1129472269&ucat=2&lang=en \ Government of Rwanda, Ministry of Infrastructure (2008), Network Organisational Chart of Ministry of Infrastructure, http://www.mininfra.gov.rw/docs/cadre_organique_du_MININFRA.pdf Organisation for Economic Cooperation and Development (2007), African Economic Outlook 2007 Shepard, Donald; Rwiyereka, Angelique K; Beaston-Blaakman Aaron, Community-based Health Insurance in Rwanda: from Case Studies to National Policy. Rwanda Medical

Journal. In press. United States Agency for International Development (2005), Rwanda Human Resources Assessment for HIV/AIDS Services Scale-Up

36

United Nations (2008), United Nations Human Development Report Database, http://hdrstats.undp.org/countries/country_fact_sheets/cty_fs_RWA.html United Nations Department of Education and Social Affairs, Division for Sustainable Development (2008), TRACnet, Rwanda: Fighting Pandemics through Information

Technology, www.un.org/esa/sustdev/publications/africa_casestudies/TRACnet.pdf United States Agency for International Development (2006), Rwanda HMIS Assessment

Report, May 9 2006. Voxiva, Inc. website, http://www.voxiva.com/rwanda.asp, accessed June 12, 2008 World Bank (2008). Education Statistics, http://www.worldbank.org/education/edstats World Bank (2008), Worldwide Governance Indicators (WGI) project, http://info.worldbank.org/governance/wgi/index.asp; accessed on June 12, 2008 World Bank (2008), Rwanda: ICT at a Glance, www.devdata.worldbank.org/ict/rwa_ict.pdf World Health Organisation, Developing Health Management Information Systems: A Practical Guide for Developing Countries

37

I. Interview List

Dr. Michael Kremer, Director General, TRACPlus- CIDC Dr. Anita Asiiwame, Director of HIV/AIDS for the STI units, TRACPlus-CIDC Dr. Richard Gakuba, e-Health Coordinator for the Ministry of Health Shabani Cishahayo, Interim Head of Surveillance of the Bioinformatics and IT Division, TRACplus Jean Baptiste Koama, Voxiva Patrick Nyirishema, http://inside.pih.org/node/754Deputy Executive Director of the Rwanda Information Technology Authority (RITA) Christian Allen, Head of Technology for Partners in Health, Rwanda Neal Lesh, Chief Technology Officer of D-tree International Dr. Jean Kagubare, Senior Program Associate, Center for Health Outcomes, Management Sciences for Health Jonathan Jackson, Co-Founder and Chief Executive Officer of Dimagi Linea Rowe, Director of Product Management of the Global Health Delivery Program, Harvard University Dr. Andrew Kanter, Director of Health Information Systems/Medical Informatics of the Millennium Villages Project, Earth Institute at Columbia University

Darius Jazayeri, Lead Programmer for Partners in Health Dr. Lisa Hirschhorn, Assistant Clinical Professor in the Department of Global Health and Social Medicine, Harvard Medical School and Senior Clinical Advisor on HIV/AIDS at John Snow, Inc. Research and Training.

38

II. Appendixes Appendix 1: Map of Rwanda and ART health facilities

Graphic from Shabani Cishahayo’s presentation at Rwanda Health Education and Information Network (RHEIN) Workshop. Kigali, May 29-30, 2008. Appendix 2: Health Indicators for Rwanda and sub-Saharan Africa

Indicator Rwanda

Rural Sub Saharan Africa, all (2005) +++

A. Socio-Economic Characteristics % poor population 45% -- % of households with access to clean water 43% 56% Primary school attainment 54% 61% B. Mortality Rates Under-5 mortality rate 2000-2005 (per 1000)* 116 163

39

Infant mortality rate 2000-2005 (per 1000)* 84 93 C. Reproductive Health Total fertility rate for 3 years prior to survey (all women 15-49) 6.1 5.2 Proportion of pregnant women who received any antenatal care at last pregnancy 93% 70% Proportion of assisted deliveries by trained personnel 35% 44% Proportion of deliveries taken place in health facility 24% -- D. Child Health Proportion of children WITHOUT full basic vaccine coverage 26% -- Proportion of children under 5 sleeping under a treated bednet 20% -- Prevalence of moderate and severely underweight children 24% 25% Prevalence of fever** 26% -- Prevalence of diarrhea** 15% -- E. Utilization of Health Services % of women who reported lack of money for treatment 74% -- % of women who reported distance to health service as a large barrier to accessing care 43% -- % of utilization of modern health services for diarrhea 14% -- % of utilization of modern health services for fever 23% -- F: Population Health Rwanda, All Sub-Saharan Africa,

all (2005) HIV prevalence (per 100,000) 3133 -- TB prevalence 2006 (per 100,000) + 562 348 (2005) Malaria cases 2000 (per 1000 population) ++ 120 --

*direct calculation used: (#died/#born alive 2000-2005)*1000. ** of children who had had diarrhea or fever reported in the weeks prior to interview +TB prevalence taken from WHO Report 2008, Global Tuberculosis Control ++ Malaria taken from most recent WHO Malaria Country Profile, Rwanda +++Sub-Saharan Africa data from Health Systems 2020 Country Brief and World Bank Development Indicators 2

40

Appendix 3: Ease of Doing Business

Economy

Ease of

Doing

Business

Rank

Starting

a

Business

Dealing

with

Licenses

Employi

ng

Workers

Registering

Property

Getting

Credit

Protecting

Investors

Paying

Taxes

Trading

Across

Borders

Enforcing

Contracts

Closing a

Business

Mauritius 1 1 4 7 33 10 2 1 1 12 6South Africa 2 3 6 14 8 2 1 13 20 13 7Namibia 3 13 3 4 21 4 9 8 26 1 2Botswana 4 12 21 10 3 2 16 2 27 17 1Kenya 5 17 1 8 15 1 12 38 30 19 11Ghana 6 24 29 27 1 15 3 15 3 4 17Seychelles 7 2 7 16 4 39 5 5 6 8 34Swaziland 8 27 2 5 27 4 46 6 28 25 4Ethiopia 9 15 9 12 29 10 16 3 31 11 8Nigeria 10 6 40 3 46 7 5 21 22 16 13Zambia 11 7 34 24 18 10 9 4 36 14 12Uganda 12 18 15 1 38 39 20 11 24 22 3Lesotho 13 21 32 9 22 15 30 9 16 18 5Malawi 14 16 20 13 11 7 9 16 37 27 27Tanzania 15 10 42 33 37 15 12 20 9 2 20Gambia 16 9 13 2 23 27 43 44 4 7 23Cape Verde 17 36 14 29 20 6 20 25 2 6 34

Mozambique 18 20 33 38 19 10 3 14 23 29 26Sudan 19 10 24 28 2 27 30 12 25 31 34Gabon 20 31 5 39 30 15 34 18 11 32 24Comoros 21 29 8 35 10 39 20 7 13 36 34Madagascar 22 4 28 32 40 46 5 17 15 35 34Rwanda 23 5 23 15 25 39 43 10 41 3 34

Benin 24 23 22 21 14 15 34 39 14 41 18Zimbabwe 25 28 44 25 9 10 16 33 43 10 33

Cameroon 26 38 36 23 24 15 16 42 18 44 16

C™te d'Ivoire 27 35 38 20 33 27 34 32 29 23 9Togo 28 44 31 30 31 27 27 31 5 37 14Mauritania 29 39 30 22 5 15 30 43 32 15 30Mali 30 32 17 11 12 27 34 36 38 39 19Sierra Leone 31 8 35 41 45 15 14 34 17 30 29

Burkina Faso 32 14 41 34 44 15 27 29 44 20 15Senegal 33 37 10 36 35 27 42 41 21 33 10S‹o Tomˇ

and Principe 34 21 19 46 28 15 20 37 7 21 34Equatorial

Guinea 35 41 16 45 6 27 30 30 19 9 34Guinea 36 40 39 17 32 27 43 40 10 24 22Angola 37 42 26 43 41 7 5 27 40 46 28Niger 38 33 37 37 7 27 34 24 39 26 25Liberia 39 26 45 19 42 27 27 26 8 40 31Eritrea 40 43 46 6 36 39 14 19 35 5 34Chad 41 45 12 26 17 27 20 28 34 42 34Burundi 42 19 43 17 16 45 34 22 42 33 34

Congo, Rep. 43 34 11 40 43 15 34 46 45 38 21Guinea-

Bissau 44 46 17 44 39 27 20 23 12 28 34Central

African

Republic 45 25 25 31 13 15 20 45 46 43 34Congo, Dem.

Rep. 46 30 27 42 26 39 34 35 33 45 32

41

Appendix 4: Ease of Doing Business

Business Procedures (number) 9 Duration (days) 16 Cost (% GNI per capita) 171.5

Starting a Business

Paid in Min. Capital (% of GNI per capita)

0.0

Procedures (number) 16 Duration (days) 227

Dealing with Licenses

Cost (% of income per capita) 822.1 Difficulty of Hiring Index 56 Rigidity of Hours Index 40 Difficulty of Firing Index 30 Rigidity of Employment Index 42 Nonwage labor cost (% of salary)

5

Employing Workers

Firing costs (weeks of wages) 26 Procedures (number) 5 Duration (days) 371

Registering Property

Cost (% of property value) 9.4 Legal Rights Index 1 Credit Information Index 2

Public registry coverage (% adults)

.2

Getting Credit

Private bureau coverage (% adults)

0.0

Disclosure Index 2 Director Liability Index 5 Shareholder Suits Index 1

Protecting Investors

Investor Protection Index 2.7 Payments (number) 34 Time (hours) 168 Profit tax (%) 20.2 Labor tax and contributions (%) 5.7 Other taxes (%) 7.9

Paying Taxes

Total tax rate (% profit) 33.8 Documents for export (number) 9 Time for export (days) 47 Cost to export (US$ per container)

2975

Documents for import (number) 9 Time for import (days) 69

Trading Across Borders

Cost to import (US$ per container)

4970

Procedures (number) 24 Duration (days) 30

Enforcing Contracts

Cost (% of claim) 78.7 Time (years) No practice Cost (% of estate) No practice

Closing a Business

Recovery rate (cents on the dollar)

0.0

World Bank (2008), Doing Business Rwanda Case

Profile: TRACnet

TRACnet is a software used by the GoR to collect and store clinic-level health

information at the central level since 2005.1 The software was developed by Voxiva inc

(a Washington D.C. based software and telecommunications company), but is managed

and used by the Treatment and Research AIDS Center (TRACplus) division of the

Ministry of Health.

TracPlus

TRACplus is the new broader incarnation of the Treatment and Research AIDS Center

(TRAC) division of the Ministry of Health. Originally, the group focused entirely on

AIDS, but has expanded to encapsulate malaria and tuberculosis as part of its broader

mandate, and plans to later include other conditions. It has changed its title to TRACplus

to reflect these changes. Additionally TracPlus is the primary national agency

responsible for Preventing Mother-to-Child Transmission (PMTCT) and Voluntary

Counseling and HIV testing (VCT), Epidemiology Surveillance, and Health ICT/

Information Management. As part of this mandate, TracPlus uses the TracNet software

developed by Voxiva to store facility-level data.

TracNet is a collaboration between both the private and public sectors. MTN and

Rwanda-Tel, the local cell phone carriers, donated network time for facilities to use when

reporting their data. Voxiva Inc., provided ICT support to the project. The United States

Centers for Disease Control and Prevention (CDC) provided the financial and

administrative support through the President's Emergency Plan for AIDS Relief

(PEPFAR).

The breadth of implementation to date is impressive. TRACnet has been deployed in all

94 health facilities offering ART in Rwanda, thus capturing virtually all ART treatment

nationwide.2 In addition, approximately 6,000 individual case records are monitored

using the system.3

According to the UN:

“TracNet is a dynamic information technology system designed to collect, store,

retrieve, display and disseminate critical program information, as well as to

manage drug distribution and patient information related to the care and treatment

of HIV/AIDS. This system enables practitioners involved in anti-retroviral (ARV)

treatment programs to submit reports electronically and have timely access to

vital information. By dialing 3456, a Rwanda toll free number, or logging onto a

1 http://www.voxiva.net/rwanda.asp

2 From Voxiva website, with updated information from report, “Development Assistance

to Health Information Systems Strengthening,” World Bank September 2007. 3 http://www.voxiva.com/rwanda.asp

bilingual website (English and French), health centre staffers can submit or

receive program results on HIV/AIDS patients as soon as they are processed.

TRACnet uses solar energy chargeable mobile phones, which can be used in the

most remote parts of the country.”4

In essence, TracNet provides a direct electronic means of transmitting consolidated data

for programmatic decision making, including national level drug procurement. A process

that once only provided one-way information and took months, has been reduced to

minutes, and can now provide two-way information.

The aggregated data guides healthcare delivery activities at the national level. For

example, TracNet data informs drug procurement at a national level. The TracNet data is

transferred to Camerwa, a Rwanda-based pharmaceutical company, that then keeps stock

of the availability of ARV drugs. TRAC monitors and supervises health facilities that

provide ARV treatment in the country. TRAC also has a team of IT personnel, who have

trained over 200 health care providers in health facilities on how to submit data to

TRACnet, and who also monitor reporting into TRACnet and publish monthly reports.

Data is entered either on a biweekly or monthly basis (depending on the statistic) and

then collected in a national repository.

Data Quality

Some challenges remain in the implementation of TRACnet. Although TracNet’s

coverage is wide, the depth and accuracy of data remain unclear. One evaluation

suggested that there is wide variance in the completeness of data depending on the size of

the facility. All ART sites had data for over 90% of patients at the time of abstraction.

However, 6 month follow-up rates for patients who were alive on ART were 56%, 60%

and 14% for small-, medium, and large-sized ART clinics. Moreover, 12-month CD4

counts were only recorded for 35%, 30% and 25% of small-, medium-, and large- ART

cites respectively. 5

Additionally, because patient-level data is not maintained electronically at most facilities,

cross-checking clinic-level data is difficult and does not appear to occur under normal

circumstances. There has been limited evaluation of data completeness to date but no

comparison of individual records at facilities with data in TracNET. The difficulty of

verification may provide perverse incentives to clinics; since drug supply is based on the

number of patients they report, over-reporting might be rewarded with excess

medications and supplies. Further evaluations of the system are planned.

While this type of surveillance is valuable for capturing a broad understanding of groups

of patients on ART, it does not identify the segment of the population whose HIV status

4 TracNet, Rwanda: Fighting Pandemics through Information Technology

5 Government of Rwanda (2008) TRAC Report on the Evaluation of Clinical and

Immunologic Outcomes from the National Antiretroviral Treatment Program in Rwanda,

2004 – 2005, p47

is unknown. These data collection efforts offer only a partial picture of the epidemic

unless coupled with population-based survey efforts.

Exhibits

Screen Shot of TRACnet

Architecture of the integration of information systems at TRACplus

Graphic from Shabani Cishahayo’s presentation at the Rwanda Health Education and

Information Network (RHEIN) Workshop. Kigali, May 29-30, 2008.

Profile: OpenMRS

OpenMRS, developed by the OpenMRS collaborative, is a free and open source medical

record system that has been in development since 2004. In Rwanda, it is used by Partners

In Health/Clinton Foundation (PIH) and the United Nations Millennium Village Project

(MVP). PIH currently operates in seven sites (as of May 2008) and their OpenMRS

installation contains data for nearly 7,000 HIV patients, over 4,000 on HIV or TB

treatment.

Partners in Health

The OpenMRS installation that PIH-Rwanda uses includes many country-specific

features. Specifically, it can generate reports that meet Rwanda reporting requirements,

including submissions to TRACnet, the national aggregation system.* It also contains

templates for quality monitoring and administrative overview reports. Patient

information is available across sites, and the data synchronizes automatically when a

computer goes online (though information is available offline as well). OpenMRS uses

Secure Socket Layer Protocol and role based authentication to ensure confidentiality of

medical data – the combination represents the same industry-grade security used by

banks and other highly-secure institutions around the world. There are data export, report

building, and patient form building tools in the software package as well. It includes

patient information lookup tools, and a variety of visualizations of patient data to help

clinicians quickly assess a patient’s progress over time.

As a result of the flexible nature of OpenMRS and the number of different functions

implemented at PIH sites, installation and maintenance of the system requires substantial

technical expertise. For example, PIH employs two full-time IT technicians to maintain

all harware system, and these technicians also have the part-time responsibility of

troubleshooting EMR hardware issues across the seven sites. Particularly challenging

issues have been stable power (now mainly addressed with solar systems), and lightening.

Use of electronic medical record (EMR) systems like OpenMRS can be very labor

intensive. It allows clinics to collect a great deal of data about their patients, but the data

entry and quality control requires human attention. PIH collects five pages of

information about HIV patients on an intake form and two pages in follow-up visits. To

cope with this inflow of data, PIH employs two data managers, four lab data officers, and

eight patient data officers, for a total staff of 14 people responsible for the collection,

cleaning, reporting, and analysis of data. If the database continues to grow, more staff

will be required to manage the data effectively. Many projects providing HIV treatment

and funded by the PEPFAR program or the Global Fund receive direct financial support

for reporting. These funds usually support the salaries of data entry staff, data managers

and also IT costs. Such funding will be important in speeding the rollout of the EMR in

Rwanda.

* For more information on TRACnet, please refer to TRACnet profile.

The implementation of the EMR at PIH sites is one in which clinicians/providers consult

with patients and write down information on paper. This paper-based information is then

given to the data team for entry. Later, the data team produces lists of patients, patient

summaries, reports, and alerts when appropriate. This information is usually printed on

paper and delivered back to a member of the clinical team. PIH has implemented patient

summaries and flow sheets within the software, and is now working to make them

directly accessible during clinical visits by clinicians. They are also working to capture

data on patient follow-up and medication collection directly from clinic staff into the

EMR.

Millennium Villages

The implementation of OpenMRS at MVP sites is more recent and contains a subset of

functionality to the PIH installation. Neither organization is implementing real-time live

entry during clinical visit for the time being.

MVP uses OpenMRS as part of its health information system in the Bugesera District. It

runs on an Atheon server linking 6 Inveneo ION workstations within the clinic. The

OpenMRS system is being used to capture primary care data (e.g. adult and pediatric visit

forms and pharmacy data) as well as vital statistics (new birth registrations). Unlike the

PIH installation, the system uses a centralized data dictionary that is shared by other

Millennium Village clinics in multiple languages to ensure that the data will be

interoperable between the MV sites and will allow aggregation across linguistic and

geographic boundaries. In Rwanda, French is the most commonly used language, though

MVP plans to translate the antenatal and community health workers forms into

Kinyarwanda.

MVP hopes to expand its installation of OpenMRS to include other primary care clinics

in Rwanda through the Access Health Project in Kigali. In addition, MVP is working

with other partners, such as ICAP at Columbia University and Loma Linda University to

include geographical information systems into its data analysis.

Exhibit 1: PIH Patient Dashboard

Exhibit 2: Screenshot of patient information on PIH installation of OpenMRS

Exhibit 3: List of patients and clinical summaries and alerts with scheduled appointments